WikiAdvocacy - User contributions [en]

Nonprofit Organization Sample Templates

2018-08-03T17:26:57Z

Aguise: Created page with "Here we are provided with multiple policy templates, provided by Kelly Trout of the International WAGR Syndrome Association."

Here we are provided with multiple policy templates, provided by Kelly Trout of the International WAGR Syndrome Association.

Main Page

2018-08-03T17:06:45Z

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== Request an Account ==

This is a community page and we encourage contribution from all, but due to excessive spamming, WikiAdvocacy requires confirmation that you are in fact a real person. If you created an account before March 1, 2014, you will need to create a new log in. Please send all account requests with your name and phone number to: info@geneticalliance.org

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|'''Introduction'''
|}
*[[Defining Our Terms]]
*[[The Power of Advocacy Organizations]]
*[[Why Go There?]]
*[[How to Use This Guide]]
*[[History of Advocacy Organizations and Genetic Alliance]]
*[[The Kitchen Table Is a Good Place to Start: Klinefelter Syndrome and Associates|The Kitchen Table Is a Good Place to Start]]
*[[Genetic Alliance]]

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|''' Assessment|Organizational Assessment '''
|}
*[[Determine Goals]]
*[[Characterize Condition]]
*[[Characterize Resources]]
*[[ Compare Goals and Resources, with the Characteristics of the Condition]]
*[[ Considering Starting a Support Group for a Condition that Already Has One?]]
*[[Challenges of 'Splinter Groups']]

|-
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{|style="color:black;width:99%;background-color:#cedff2;font-weight:bold;bolder:1px solid #a3b0bf;" border="0" cellpadding="5" cellspacing="2" align="center"
|'''[[Developing the Organization That Can Achieve Your Goals|Organization Development]]: Organizational Structure'''
|}

*[[Advisory Boards]]
*[[Bylaws and Articles]]
*[[Developing a Governance Board|Governance Board]]
*[[Ensuring Cultural Competence]]
*[[Finding a Lawyer]]
*[[Insurance and Policies]]
*[[International Offices]]
*[[NAC Best Practices]]
*[[Your Organization's Name Is Important|Organization's Name]]
*[[Staff]]
*[[Tax and Finance]]
*[[Volunteers]]
*[[Working Remotely]]
*[[Working with a Lawyer]]

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|'''[[Developing the Organization That Can Achieve Your Goals|Organization Development]]: Resources for Development'''
|}

*[[Becoming the Organization You Imagine]]
*[[Building a Website]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Financial Assets]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[Novel Meeting Formats]]
*[[People and Roles]]
*[[Recruiting]]
*[[Taking Credit Cards on the Web]]
*[[Donations from Canada/Outside the US]]

|-
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{|style="color:black;width:99%;background-color:#cef2e0;font-weight:bold;border:1px solid #a3bfb1;" border="0" cellpadding="5" cellspacing="2" align="center"
|'''[[Functions of Advocacy Organization]]: SUPPORT'''
|}
*[[Autopsies and Tissue Collection]]
*[[Best Practices]]
*[[Conferences, Workshops, and Meetings for Affected Individuals]]
*[[Connecting Individuals]]
*[[Connecting Organizations]]
*[[Dealing with Death]]
*[[Internet Services]]
*[[Phone Services: Going Beyond the Phone Tree|Phone Services]]
*[[Protecting Member Privacy]]
*[[Informal Offices or Regional Support Groups|Regional Support Groups]]
*[[Resources for School Success]]
*[[Setting Up A National Conference]]
*[[Social Networking]]
*[[Support for Individuals and Families]]
*[[Youth to Adult Transition Issues]]

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|'''[[Functions of Advocacy Organization]]: EDUCATION'''
|}
*[[Articles, Letters, and Other Media for Lay Publication]]
*[[Brochures and Fact Sheets]]
*[[Clinician- and Researcher-Focused Materials]]
*[[Family Health History]]
*[[Medical Records]]
*[[Newsletters and Bulletins]]
*[[Press Kits]]
*[[Publicity and General Media]]
*[[Publisher Recommendations]]
*[[Starting Points for Planning Materials]]
*[[Webinars]]

|-
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|'''[[Functions of Advocacy Organization]]: RESEARCH'''
|}
*[[Barriers to Rare Disease Research]]
*[[Benefits of Collaboration with Advocacy Organization Community]]
*[[Blood and Tissue Banks]]
*[[Consumers and Researchers: Making It Work|Consumers and Researchers]]
*[[Creating a Natural History Survey]]
*[[Educating Membership about Research]]
*[[Facilitating Quality Research]]
*[[Funding Research by Others]]
*[[Getting Needs onto the Research Agenda]]
*[[Genetic Privacy]]
*[[Orphan Drug Application]]
*[[Patient's Bill of Rights]]
*[[Planning a Research Conference]]
*[[Promoting Research]]
*[[Registries]]
*[[Registry and Biobank Weekly Tips]]
*[[Research Models]]
*[[Translational Science]]

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|'''[[Functions of Advocacy Organization]]: ADVOCACY'''
|}
*[[Councils and Other Advisory Bodies]]
*[[Getting an ICD-9 code added for your condition]]
*[[Getting Needs on Government and Legislative Agendas]]
*[[Legislation and Policy Advocacy]]
*[[National Institutes of Health (NIH)]]
*[[Policy Tools & Resources]]

|-
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{|style="color:black;width:99%;background-color:#cef2e0;font-weight:bold;border:1px solid #a3bfb1;" border="0" cellpadding="5" cellspacing="2" align="center"
|'''Resources'''
|}
*[[Advocacy Organizations List]]
*[[Advocacy Resources]]
*[[Assistive Technology]]
*[[BioBanks]]
*[[Blogging]]
*[[Children's Hopes and Dreams Foundations]]
*[[Consumer Medical Information]]
*[[Emergency Preparedness]]
*[[Fundraising]]
*[[Fundraising Appeals]]
*[[Fundraising/Third Party]]
*[[Joint Fundraising]]
*[[General Resources]]
*[[Information about Rare Genetic Diseases]]
*[[Matching Resources]]
*[[Meet Your Neighbors & Organizations]]
*[[Nonprofit Organization Sample Templates]]
*[[Publications]]
*[[Resources for Nonprofits]]
*[[Sibling Support]]
*[[State Registration]]
*[[Travel]]

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|'''Speakers Bureau'''
|}
*[http://genomicsforum.org/?page=MDirectory Genomics Forum Directory]
*[[Individual Speaker Recommendations]]

Benefits of Collaboration with Advocacy Organization Community

2018-08-02T16:48:37Z

Aguise: /* Resources */

There are creative examples of research studies whose protocol design, from the very beginning, encourage mutual commitment to, and shared responsibilities for, research tasks. Among these approaches are advocacy organization efforts to fund, select and direct research of their particular rare conditions. One of the first and best prototypes for collaborative research teamwork between investigators and advocacy organizations is the March of Dimes' unrelenting and successful campaign to find a cure for polio.

Other more recent successes point out the unique research vantage point enjoyed by researchers funded by advocacy organization foundations. They work from start to finish inside the rare condition community and within sight of the concerns of families and participants. Through close proximity to the day to day rare condition specialists, i.e. families living with that rare condition, there is enhanced potential for achieving a better understanding of the complex physical and emotional layers of the rare condition. These direct connections between advocacy organizations and clinical researchers can augment opportunities for communication, collaborative, and trust, and support successful completion of the research study to the satisfaction of all parties involved.

==Genetic Alliance Experience==

Out of 600 advocacy organizations in the Genetic Alliance database in 2003, over 150 groups reported direct involvement in research on their rare condition, maintenance of a database of affected persons, and encouragement of frequent research/family interface. It is important to get a more accurate picture of the process of these collaborative efforts, that is, to what extent consumers are involved from the beginning of the research protocol, whether a medical advisory committee reviews the research proposals and selects research protocols, and the degree to which informed consent, educational and counseling components are considered standard practice. Organizations that have already been successfully working together with researchers serve as crucial models from which there is much to be learned. Genetic Alliance can help determine existing models of collaboration and introduce them to the research community for active role modeling.

Genetic Alliance stays aware of which organizations support collaborative research, how these efforts are proceeding, and to what extent these organizations might be willing to train, advise and mentor new organizations venturing into the research field. Umbrella organizations like Genetic Alliance are also well suited, along with the larger advocacy organizations, to provide workshops for the leaders of advocacy organizations interested in directing their own research. These workshops could benefit from participation of the research community to explain IRB functions, research design protocols, the need for privacy safeguards with respect to registries of affected individuals, informed consent procedures, advice on participant expectations, and issues of confidentiality, privacy and genetic discrimination. Genetic Alliance started this process at the September 1998 membership conference.

Individual advocacy organizations and research organizations also play a central role in linking researchers to families through conferences, newsletters, help lines, websites and registries of affected individuals.

==Vision==

A research partnership will develop between the consumer and research communities as respective visions, passions, interests and concerns are shared, appreciated and integrated. Optimal rare condition research happens within the context of shared collaboration and enlightenment, mutual respect and ongoing, two-way communication at every stage of the research protocol, from start to finish.

The bottom line is that rare condition research will work best through full partnership, collaboration and cooperation between the consumer and research communities. Genetic Alliance is ready to do its part to help make this happen. In our next section, we will look at three models for using many different approaches to pull together a research plan.

==Resources==

[https://www.iapo.org.uk/working-partners-and-stakeholders-toolkit Working with Partners and Stakeholders Toolkit], from the International Alliance of Patients' Organizations, provides guidance and recommendations on how patient organizations can develop effective, long-term partnerships with a range of stakeholders, including other advocacy groups, government, industry, and health care providers. Additionally, it includes materials to assist organizations in developing their infrastructure and capabilities. Toolkit covers awareness-raising, advocacy, strategic planning, fundraising and effective communication.

==Internal Links==
*[[Barriers to Rare Disease Research]]
*[[Blood and Tissue Banks]]
**[[Genetic Alliance BioBank]]
*[[Consumers and Researchers: Making It Work|Consumers and Researchers]]
*[[Educating Membership about Research]]
*[[Facilitating Quality Research]]
*[[Funding Research by Others]]
*[[Getting Needs onto the Research Agenda]]
*[[Genetic Privacy]]
*[[Orphan Drug Application]]
*[[Patient's Bill of Rights]]
*[[Promoting Research]]
*[[Registries]]
*[[Research Models]]
**[[Research Model 1: Recessive Disorder]]
**[[Research Model 2: Chromosomal Disorder]]
**[[Research Model 3: Dominant Disorder]]

Barriers to Rare Disease Research

2018-08-02T16:40:13Z

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From the Genetic Alliance's perspective, there are a number of significant, but not insurmountable, barriers to rare condition research:
*Difficulty finding, enlisting and maintaining participants in rare condition clinical trials
*Inadequate orientation, education and preparation of research participants and their families for clinical trials participation
*Less than full commitment by participants to completion of the entire research study
*Inadequacy of funds to cover transportation costs for families and individuals traveling to research sites, and to cover other expenses incurred as a result of time away from employment and child care responsibilities
*Less than optimal communication between research investigators, the IRB overseeing the research and research participants
*Lack of consensus among professional, consumer and commercial organizations on standard informed consent procedures, including process of release of rare condition tissue to a storage bank, specified utilization of release samples, research data privacy controls and participation in clinical trials
*Inadequate genetic and medical privacy protections, on state and federal levels, which contribute to consumer reluctance to participate in research studies
*Research community's disregard for consumer concerns about genetic privacy, security of research records and genetic discrimination
*Inadequate access to and limited availability of the full range of rare condition tissue samples
*Instability of research funding which may result in premature termination of the study
*Lack of central coordination of ongoing clinical trials research
*Inadequate national coordination of the results of completed research studies

==Breaking Down Barriers==

The most critical factor in breaking down these barriers to research, from the consumer perspective, is the development of true research partnerships between consumers and investigators which value and respect the contributions of both partners and both perspectives. Advocacy organizations, consumers and families identified with the rare condition must share responsibility for research grant selection, protocol design, oversight and project implementation, and receive full collaborative support of researchers.

==IRB Inclusion==

An Institutional Review Board (IRB) is the local formal body usually within the institution where the research is being conducted whose purpose is to approve and oversee medical research involving people. IRBs are made up of individuals from all walks of life, from both within and outside of the institution, who are charged with evaluating the medical, ethical, and legal ramifications of the research with an eye on the interests of those who will participate. A more cynical view includes the perspective that IRBs are more concerned about protecting hospitals, researchers and institutions from liablility, than serving the interests of research participants.

Genetic Alliance proposes that the most effective way to meet mutual research goals is to include potential participants, or representatives of the participant community, as full members of the IRB at the earliest stages of research protocol design. To maximize participant contribution to research, consumers need to be educated about the research process itself. Consumers must understand the process involved in research, and how their personal contributions relate to the advance of genetic knowledge.

Genetic Alliance encourages the research community to include knowledgeable consumers, who understand the rare condition from both personal experience and from a research perspective, in integral roles on all IRBs considering rare condition research. This would help open channels for communication, trust and collaboration between researchers and those participating in clinical research studies from the very beginning. Above all, it will provide insight into how the proposed protocol would impact participant families.

==Other Strategies==

Along with including consumers on IRBs, the following strategies will also help promote the coordination of research:

*Consensus across consumer, professional and research communities on informed consent, counseling, education and follow-up procedures to accompany research interventions. An important Genetic Alliance publication, the Informed Consent brochure [link to the brochure once Melissa finishes laying it out], has gradually become the prototype for research as well as clinical protocol informed consent procedures and can serve as a useful starting point for developing consensus among research and advocacy organizations.
*Use of advocacy organizations to provide direct access to research participants and families, and encourage their enlistment. These organizations can collaborate in orientation, preparation, education, counseling and informed consent procedures reflecting research and participant perspectives and agendas.
*Increase awareness of researchers about the emotional, financial and physical needs of families participating in research studies. Participant families may experience stress due to the following: separation from other children, spouse, employment and the structure of normal daily life; travel over long distances to clinical studies; and having questions to which there may not be answers at the time of the study, or to which there may never be answers.
*Education and orientation of research participants so they fully understand and appreciate the value and limitation of their participation in research for their families and for rare condition research.
*Passage of state and federal statutes guaranteeing protection of medical and genetic privacy and confidentiality so that participants can enlist and participate without fear of negative impact on employment or health insurance.
*Passage of profit incentives through permanent tax credits for rare condition research.
*Encouragement of all advocacy organizations to establish professional advisory boards to monitor in-house review and consideration of applicant research proposals. The primary task or job description of board members would be to keep abreast of current research.
*Improve tissue availability through enhancing current storage of a full range of rare condition tissues, and by creating an Internet-accessible catalogue of available tissue in various tissue storage collections.
[https://ncats.nih.gov/trnd *Collaborating with Therapeutics for Rare and Neglected Diseases]- Therapeutics for Rare and Neglected Diseases (TRND) is a congressionally mandated program at the National Institutes of Health (NIH) designed to help bridge the gap between discovery research and the testing of new drugs in humans. The TRND program partners with a variety of institutions, including academic laboratories, not-for-profit organizations and for-profit companies, to help generate the data needed to support a successful Investigational New Drug Application (IND) for therapies aimed at treating rare and neglected diseases. TRND is set up to support the discovery, optimization, and preclinical testing needed for a successful IND application, as well as the first-in-human studies as needed.

==Internal Links==
*[[Benefits of Collaboration with Advocacy Organization Community]]
*[[BioBanks]]
*[[Blood and Tissue Banks]]
**[[Genetic Alliance BioBank]]
*[[Consumers and Researchers: Making It Work|Consumers and Researchers]]
*[[Educating Membership about Research]]
*[[Facilitating Quality Research]]
*[[Funding Research by Others]]
*[[Getting Needs onto the Research Agenda]]
*[[Genetic Privacy]]
*[[Orphan Drug Application]]
*[[Patient's Bill of Rights]]
*[[Promoting Research]]
*[[Registries]]
*[[Research Models]]
**[[Research Model 1: Recessive Disorder]]
**[[Research Model 2: Chromosomal Disorder]]
**[[Research Model 3: Dominant Disorder]]

Publicity and General Media

2018-08-01T16:40:46Z

Aguise: /* Pre Publicity Considerations */

Publicity is a much sought after, and sometimes elusive, avenue to building membership. For organizations just starting out, and even those already established, it is important to be constantly aware of opportunities for publicity and to learn to create these opportunities.

Everything you do is an opportunity for publicity. Start small, and be aware that even a new angle on an old activity might prove newsworthy. Regularly announce meetings to the local papers and radio stations. Invite reporters and photographers to your events. Make these events personal—with the permission of a person involved in the activity, highlight his or her participation. You can also get information into the local media without paying for space by submitting a calendar item or press release.

==Publicity and General Media==
:Patrick Terry, PXE International

"In our first few years, we were pretty desperate for ways to get publicity so that we could find new members. So we cooked up this scheme—we'd announce a meeting for affected individuals—before there was a meeting planned! Thus the newspaper or radio in Anytown, Anywhere would carry the calendar item for free and we'd get phone calls from people with PXE! If there were only a few people, we'd plan a meeting for another time, or a regional meeting, to combine several cities. In the cases where a large number of individuals emerged, we'd have a meeting in someone's home or a church hall and grow our membership at the same time we provided support. PXE International knew that as an organization representing a very rare condition we'd have to be very creative!

Another method: having planned a dinner dance, PXE International negotiated free billboard space on the central expressway in Boston—instead of emphasizing the dance, they used the event to again attract members. The billboard read, "Dinner Dance for Pseudoxanthoma Elasticum (PXE). Call 781-784-3817." People familiar with PXE driving by the billboard reported almost driving off the road with surprised delight that someone knew of their condition."

Another way to do this is to submit a press release. A press release—more properly called a news release—gives a brief description of a new event, discovery, or achievement, and then provides a short description of your organization with contact information. You can use wire services to distribute these releases, which newspapers then pick up as source material for articles or as notes for future articles.

Wire services also distribute calendars that indicate when information needs to be submitted to publishers in consideration of special calendar dates, such as holidays. If you plan events in conjunction with holidays or have other ways to tie your organization to a holiday, you can coordinate a news release with this editorial calendar to increase the impact of your release.

You can contact major media outlets more directly with your story—look for radio, newspaper, and television connections. Do you have a member who has an interesting story? Does one of your members do something incidental to the condition, but the condition can be mentioned as a part of the story? Is the individual or family willing and ready to go public with their story? Your story is interesting, and news outlets are eager to tell it, you just need to connect with the media. Does someone in your organization have media experience?

Be sure to let media know about every event you create, including all your fundraisers and meetings. Don't just alert them. Give them a press kit, educational information, contacts they can use for interviews, and story angles. Relate your event to other newsworthy items wherever possible. A media report on gene therapy, the Human Genome Project, and all kinds of studies and discoveries can use a human interest story—you just need to show the publications the connection between the big event and your condition. The media rely on personal examples to help flesh out the human dimensions of these stories for readers, and your organization can help them while getting visibility for itself.

That said, do not compromise the safety or comfort of your members just to get some air time. Make sure you know the implications—particularly when affected individuals and their families are being interviewed or having their pictures used. There are, at present, no federal protections in place for genetic discrimination in employment or insurance, so be sure that interviewees are not risking discrimination by being public about the condition—and that they understand the implications of participating.

==Getting the Media Interested==

Whether it's to increase awareness of your organization or to seek funding, it's important to be able to offer a quick sound bite about your organization that will capture an individual's attention and get the media interested.

Another way to get the media interested is to include stories in small, hometown newspapers.

:Beth Anderson, Founder, Executive Director, and President of the Board
:PAGER Association

"As part of a big awareness campaign, we want to get stories about our members placed in their hometown newspapers. We don't have time to do the placement work or write articles ourselves, so we put out a plea for volunteers. Most small newspapers will take human interest/first-person medical articles from independent writers.

Our ad was for a "virtual" opportunity, which means the volunteer can work from home. We titled it "Amateur Journalist" and said we would match them up with a family that wants to be interviewed. I sent out instructions with each match, telling them how to work together to place the story in small newspapers where the family lives.

We got dozens of responses from writers who answered our volunteer announcement on VolunteerMatch.com. In fact, the response was overwhelming, and we had to take the announcement down after just a few days."

You should also be aware that the media are looking to hook their audience as surely as you are looking to hook the media. For human-interest stories of good deeds or with good outcomes, this can be a very helpful thing. But understand that the media may also find a less than flattering angle, particularly if there is controversy surrounding some aspect of your condition or the research or treatment for it. Understand that the media usually illustrate controversy by focusing on two extreme and diametrically opposed opinions—and this could create a negative impression for your organization or your condition. Know what your interviewees will say, and work with all members who have media contact to agree on a strategy for that contact—a party line, so to speak. You may want to have a half page of "talking points" about the condition and your organization for the person being interviewed. Keep in mind that the media organizations are all in business to make news and not necessarily to educate the public or fulfill the goals of your organization.

==Creative Ways to Get Your Message Out==
:Wendy Hubbard
:PXE International

"Also look for any related story or letter in popular magazines and newspapers. When Prevention Magazine ran a story on the importance of walking to ease cramping in calves caused by low blood flow, PXE International wrote a letter, and asked my permission to submit it with my name as the author. The letter thanked the magazine for the article and mentioned how I had sent it to PXE international to tell them how great Prevention Magazine is. The result for PXE International was 10 new members—all of whom read the article and learned about us!"

==Press Release Service==

'''Question:'''
How does your organization send out press releases? Are there services that offer this free of charge? Have your organizations ever paid for a service?

'''Answer:'''
We pay for a VOCUS service, which is part of PR http://www.vocus.com/pricing/#compare

We are allowed distribution of five press releases a month, social media monitoring, some help with writing and pay $2,500 per year. (Please don't reveal our rate to them) It is a wonderful option as we do all our own work ourselves whenever possible and very seldom hire consultants or pay for services.
We needed something semi robust since we have a large undiagnosed base. What is VERY important is to do some extremely hard negotiation with companies such as this as they will try to sell you their biggest PR kit, which most likely won't be used. You never want to use PR extensively, just when there is a major event or when you make news about the organization. If your organization is anything like ours, we are very tight with the dollar…and tough negotiation is absolutely essential to get twice as much with so very little.

When writing our press releases, we do pass them by those in our base who are journalists, so they can clean them up for us.
The social media aspect is so very important because that also shows up on Google … to keep it fresh every single day… as far as the website, put as many relevant links as you can so you can be in the top five discussing your mission!

==Pre Publicity Considerations==

Be sure to assess the type and amount of publicity your organization wants. Research your possible avenues carefully. Here are some good resources and points to consider when starting to plan:

*[[Preparing for and Handling Publicity]]

At times your organization may receive requests from individuals who are fundraising for a specific person, or for personal expenses. While there are some nonprofit organizations, such as HelpHopeLive, whose mission is to aid families with covering their own medical expenses by raising philanthropic dollars, there are many organizations that may feel this could result in the loss of their 501(c)(3) status and the misrepresentation of their mission, logo, or website. However, there are ways to protect your organization’s mark. For example, Genetic Alliance and PXE International keep their marks protected for free by using the trademark website [http://www.uspto.gov/trademarks/teas/ TEAS].

Jim Moore

AXYS

“Copyright often is more of a declaration than formal registration of ownership.
A trademark is slightly different. AXYS trademarked its name/logo, and we registered the trademark. We paid over $700 to research and register the trademark, and that was only a fraction of the true cost, most of which was donated as pro-bono services.

Meanwhile to copyright your material, you can go through a formal process, but few do that. Instead, you simply declare it with the symbol and statement. I worked in television, and we copyrighted every newscast, and all other media respected the copyright, or risked vigorous litigation. We never registered those copyrights; we produced about 8 to 10 live shows per day.
For Example:
© Copyright 2014...all rights reserved. (The copyright symbol is in your symbols font.)

Our website contains a simpler statement: Copyright 2014 by AXYS

The simplicity of a copyright is fairly important to managing the huge volumes of original material most organizations produce. Registering a copyright on anything less than a book or movie is too onerous.

As I understand it, a trademark protects you from someone else actually stealing your name, as opposed someone trading on your name. They are not pretending to be you, or using your name to describe another organization, they are, instead, pretending your organization endorses or supports their work.

My personal inclination is that you should fully enforce your ownership and enforce “fair use” and “crediting” standards. As I understand it, in the eyes of the law, failure to enforce is tantamount to permission once it can be established that the owner of the copyright is aware of the infringement. The use of your logo is absolutely verboten except when legitimately referencing your organization...but not trading on its “good name.”
The following links have information on Fair Use:
[http://www.copyright.gov/fls/fl102.html]
[http://www.nolo.com/legal-encyclopedia/fair-use-rule-copyright-material-30100.html]

Furthermore, the following link is a Google search with a lot of resources on Crediting: [http://bit.ly/1rDQZ9X]

Your organization may not choose to declare a copyright or trademark, but this does not necessarily mean your rights are limited. A college professor was recently fired and sued for plagiarizing a student’s work. Students do not copyright their work, and yet they own it. This illustrates that a work that exists prior to the plagiarism and can be traced to the owner/author is still owned by the owner/author. It’s a harder struggle, but being able to trace the origins of a work and subsequent “unfair” use by another party is quite compelling.

Disclaimer: I am not an attorney or a CPA. All comments shared are opinions only, and they are not, nor should they be construed to be counsel. Please seek counsel from an attorney or CPA.”

Dean Suhr

MLD Foundation

“In addition to putting the copyright notice on all materials, including the footer of each web page, I would also suggest that organizations consider having a usage/reference policy in their websites’ terms of use. We find that having things written down makes it easier to respond to requests, and certainly makes it easier to enforce/notify if someone is stealing/violating/infringing because the policy is written and we can show it pre-dates the infringement (notice that we keep a revision history on that page as well).

Our [http://mldfoundation.org/legal-tm.html Legal and Trademark page] on our website has the following sections:
- Copying, Pasting, and Copyrights
- Linking & iFrames (re-purposing our website pages)
- Trademarks (note that for clarity we list/show our trademark phrases and logo)

You are welcome to copy any use any and all information on our legal & trademarks page for your own organization(s).

Families, and even some organizations, often copy our disease descriptions word for word to their site. Their hearts are good in terms of education and awareness, but that' simply the wrong approach. We often do a Google search for some key phrases we have embedded in the disease description to find violators.

It is very import that you notify all infringers in writing; frankly, it's less important from a legal perspective if a family infringer actually removes the content than it is if it's another organization or company, but your obligation is to treat all infringers equally and you must notify them all -- otherwise an infringing organization could say you are selective about, or not, protecting your ownership rights.

Second to our disease description and research updates, the most commonly copied MLD item is our logo butterfly. Often it's for private fundraisers (or tattoos!). They equate, thanks to our hard work, our butterfly logo with the disease so it makes sense to them. We usually will grant permission to use the butterfly, as long as our URL and the copyright symbol are both present - and where possible, we try to keep the branding colors intact, too. We often give use permission for private fundraisers as long as they make it clear that donations are not coming to us and are not tax deductible - this builds awareness & credibility of our organization, strengthens relationships, and often nets us some direct or indirect donations.

Some ask how we can copyright a butterfly ... take a close look and you will see this is not an ordinary butterfly. It has faces in the bottom of each wing. See [http://mldfoundation.org/logo.html story here]. Notice how we, in a more subtle way than on the legal and trademark page, have also reiterated portions of the usage rules on this page (note that generally it's not a good idea to have a policy printed in two places, unless you are very careful to maintain consistency).”

==Publicity Opportunities==

Several groups have been approached about being featured on a program entitled "INSIGHTS," a show hosted by Hugh Downs and aired on Discovery Health. Many groups report that after talking with individuals associated with the program, they learned that groups are asked to pay ~$22,000 to $25,000 to be featured.

''[This paragraph submitted by Dean Suhr, [http://MLDfoundation.org MLD Foundation] Oct-09'' In short, Insights offers to produce a professional video and then have 400 national TV placements on Discovery Health, PBS, CNBC, Fox News, CNN, etc. But each market is one placement so your piece will likely play only once to a given audience. You are essentially left with a very expensive professional video. Probably not a good cost/benefit ratio for most foundations. They were careful with me to describe PBS as a potential distribution channel, not an affiliate - others have described being told they were part of PBS. You can see the sales documents and contracts on their website: [http://www.insightshd.com Insights], click on the Medical Picture (upper left), Scroll down the left column and click on the "Special Invitation" key and enter Username: guest Password: 2009

A response from PBS (who the program claims it is affiliated with) stated:

PBS is not affiliated with this program.

There is some information about companies making similar claims or offers to the one you received under the [http://www.pbs.org/aboutpbs/aboutpbs_faqs.html Frequently Asked Questions] section of the PBS Web site. Scroll down to the heading “Other Frequently Asked Questions.” You’ll see several questions regarding situations that are similar to the one you described in your message.

Here is the [http://www.pbs.org/aboutpbs/aboutpbs_faqanswers.html#paradigm answer] PBS posted:

PBS wishes to clarify that it is not associated with and does not endorse, distribute programming for, review underwriting for or otherwise have any business relationship with the following production companies: VM Television, Vision Media Television, Paradigm Media Group, PMG, PMGTV, Infinity Media Group, Roadshow Productions, Family Television Studios, United Media Communications Group, American Review TV, Business Break TV, Event Media TV, or Global Television Studios. PBS does not oversee the production or distribution of any programs associated with any of these companies.

If you are solicited by a production company that claims or implies an association with PBS, please notify [http://www.pbs.org/aboutsite/aboutsite_emailform.html PBS].

====Public Relations====
Good public relations (PR) is key to getting upcoming research and advocacy viewpoints into a wider professional and public arena. Some forums for PR projects may focus on community newspapers, setting up and managing social network sites (Facebook, Twitter, Volunteerspot, Foursquare, Youtube, etc.), press releases about your research or upcoming events, and documentary style interviews with key participants and staff. These help you share what is going on within your organization while also opening the dialogue between the members of the public and specific field.

Assembling a PR team, whether it is through a student run university organization/class or a professional team can offer assistance with interfacing with the media. While student run projects can be a more cost efficient option because they are more likely to offer their services for free or at low cost, the time commitment they can offer may not support all of your organization's needs. You also may have to devote more time to informing them about your organization and making sure projects are wrapped up in a meaningful and useful way by the time their project concludes. Hiring a professional team allows you to devote less time to guiding them through the process as well as guarantees greater time commitment to support ongoing PR projects. The downside to hiring a team is that their services can be quite expensive. When deciding between your PR options, you must weigh the needs of your organization and the cost that it would incur, both financially and for those responsible for interacting with the PR agency.

==National Awareness Days==
Information on creating a national awareness day for rare diseases that do not already have an official day.
[[National Awareness Day]]

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Building a Website]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[National Awareness Day]]
*[[People and Roles]]
*[[Recruiting]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Social Networking]]
*[[Taking Credit Cards on the Web]]

Publicity and General Media

2018-08-01T15:59:19Z

Aguise: /* Pre Publicity Considerations */

Publicity is a much sought after, and sometimes elusive, avenue to building membership. For organizations just starting out, and even those already established, it is important to be constantly aware of opportunities for publicity and to learn to create these opportunities.

Everything you do is an opportunity for publicity. Start small, and be aware that even a new angle on an old activity might prove newsworthy. Regularly announce meetings to the local papers and radio stations. Invite reporters and photographers to your events. Make these events personal—with the permission of a person involved in the activity, highlight his or her participation. You can also get information into the local media without paying for space by submitting a calendar item or press release.

==Publicity and General Media==
:Patrick Terry, PXE International

"In our first few years, we were pretty desperate for ways to get publicity so that we could find new members. So we cooked up this scheme—we'd announce a meeting for affected individuals—before there was a meeting planned! Thus the newspaper or radio in Anytown, Anywhere would carry the calendar item for free and we'd get phone calls from people with PXE! If there were only a few people, we'd plan a meeting for another time, or a regional meeting, to combine several cities. In the cases where a large number of individuals emerged, we'd have a meeting in someone's home or a church hall and grow our membership at the same time we provided support. PXE International knew that as an organization representing a very rare condition we'd have to be very creative!

Another method: having planned a dinner dance, PXE International negotiated free billboard space on the central expressway in Boston—instead of emphasizing the dance, they used the event to again attract members. The billboard read, "Dinner Dance for Pseudoxanthoma Elasticum (PXE). Call 781-784-3817." People familiar with PXE driving by the billboard reported almost driving off the road with surprised delight that someone knew of their condition."

Another way to do this is to submit a press release. A press release—more properly called a news release—gives a brief description of a new event, discovery, or achievement, and then provides a short description of your organization with contact information. You can use wire services to distribute these releases, which newspapers then pick up as source material for articles or as notes for future articles.

Wire services also distribute calendars that indicate when information needs to be submitted to publishers in consideration of special calendar dates, such as holidays. If you plan events in conjunction with holidays or have other ways to tie your organization to a holiday, you can coordinate a news release with this editorial calendar to increase the impact of your release.

You can contact major media outlets more directly with your story—look for radio, newspaper, and television connections. Do you have a member who has an interesting story? Does one of your members do something incidental to the condition, but the condition can be mentioned as a part of the story? Is the individual or family willing and ready to go public with their story? Your story is interesting, and news outlets are eager to tell it, you just need to connect with the media. Does someone in your organization have media experience?

Be sure to let media know about every event you create, including all your fundraisers and meetings. Don't just alert them. Give them a press kit, educational information, contacts they can use for interviews, and story angles. Relate your event to other newsworthy items wherever possible. A media report on gene therapy, the Human Genome Project, and all kinds of studies and discoveries can use a human interest story—you just need to show the publications the connection between the big event and your condition. The media rely on personal examples to help flesh out the human dimensions of these stories for readers, and your organization can help them while getting visibility for itself.

That said, do not compromise the safety or comfort of your members just to get some air time. Make sure you know the implications—particularly when affected individuals and their families are being interviewed or having their pictures used. There are, at present, no federal protections in place for genetic discrimination in employment or insurance, so be sure that interviewees are not risking discrimination by being public about the condition—and that they understand the implications of participating.

==Getting the Media Interested==

Whether it's to increase awareness of your organization or to seek funding, it's important to be able to offer a quick sound bite about your organization that will capture an individual's attention and get the media interested.

Another way to get the media interested is to include stories in small, hometown newspapers.

:Beth Anderson, Founder, Executive Director, and President of the Board
:PAGER Association

"As part of a big awareness campaign, we want to get stories about our members placed in their hometown newspapers. We don't have time to do the placement work or write articles ourselves, so we put out a plea for volunteers. Most small newspapers will take human interest/first-person medical articles from independent writers.

Our ad was for a "virtual" opportunity, which means the volunteer can work from home. We titled it "Amateur Journalist" and said we would match them up with a family that wants to be interviewed. I sent out instructions with each match, telling them how to work together to place the story in small newspapers where the family lives.

We got dozens of responses from writers who answered our volunteer announcement on VolunteerMatch.com. In fact, the response was overwhelming, and we had to take the announcement down after just a few days."

You should also be aware that the media are looking to hook their audience as surely as you are looking to hook the media. For human-interest stories of good deeds or with good outcomes, this can be a very helpful thing. But understand that the media may also find a less than flattering angle, particularly if there is controversy surrounding some aspect of your condition or the research or treatment for it. Understand that the media usually illustrate controversy by focusing on two extreme and diametrically opposed opinions—and this could create a negative impression for your organization or your condition. Know what your interviewees will say, and work with all members who have media contact to agree on a strategy for that contact—a party line, so to speak. You may want to have a half page of "talking points" about the condition and your organization for the person being interviewed. Keep in mind that the media organizations are all in business to make news and not necessarily to educate the public or fulfill the goals of your organization.

==Creative Ways to Get Your Message Out==
:Wendy Hubbard
:PXE International

"Also look for any related story or letter in popular magazines and newspapers. When Prevention Magazine ran a story on the importance of walking to ease cramping in calves caused by low blood flow, PXE International wrote a letter, and asked my permission to submit it with my name as the author. The letter thanked the magazine for the article and mentioned how I had sent it to PXE international to tell them how great Prevention Magazine is. The result for PXE International was 10 new members—all of whom read the article and learned about us!"

==Press Release Service==

'''Question:'''
How does your organization send out press releases? Are there services that offer this free of charge? Have your organizations ever paid for a service?

'''Answer:'''
We pay for a VOCUS service, which is part of PR http://www.vocus.com/pricing/#compare

We are allowed distribution of five press releases a month, social media monitoring, some help with writing and pay $2,500 per year. (Please don't reveal our rate to them) It is a wonderful option as we do all our own work ourselves whenever possible and very seldom hire consultants or pay for services.
We needed something semi robust since we have a large undiagnosed base. What is VERY important is to do some extremely hard negotiation with companies such as this as they will try to sell you their biggest PR kit, which most likely won't be used. You never want to use PR extensively, just when there is a major event or when you make news about the organization. If your organization is anything like ours, we are very tight with the dollar…and tough negotiation is absolutely essential to get twice as much with so very little.

When writing our press releases, we do pass them by those in our base who are journalists, so they can clean them up for us.
The social media aspect is so very important because that also shows up on Google … to keep it fresh every single day… as far as the website, put as many relevant links as you can so you can be in the top five discussing your mission!

==Pre Publicity Considerations==

Be sure to assess the type and amount of publicity your organization wants. Research your possible avenues carefully. Here are some good resources and points to consider when starting to plan:

*[[Preparing for and Handling Publicity]]

At times your organization may receive requests from individuals who are fundraising for a specific person, or for personal expenses. While there are some nonprofit organizations, such as HelpHopeLive, whose mission is to aid families with covering their own medical expenses by raising philanthropic dollars, there are many organizations that may feel this could result in the loss of their 501(c)(3) status and the misrepresentation of their mission, logo, or website. However, there are ways to protect your organization’s mark. For example, Genetic Alliance and PXE International keep their marks protected for free by using the trademark website [http://www.uspto.gov/trademarks/teas/ TEAS].

Jim Moore

AXYS

“Copyright often is more of a declaration than formal registration of ownership.
A trademark is slightly different. AXYS trademarked its name/logo, and we registered the trademark. We paid over $700 to research and register the trademark, and that was only a fraction of the true cost, most of which was donated as pro-bono services.

Meanwhile to copyright your material, you can go through a formal process, but few do that. Instead, you simply declare it with the symbol and statement. I worked in television, and we copyrighted every newscast, and all other media respected the copyright, or risked vigorous litigation. We never registered those copyrights; we produced about 8 to 10 live shows per day.
For Example:
© Copyright 2014...all rights reserved. (The copyright symbol is in your symbols font.)

Our website contains a simpler statement: Copyright 2014 by AXYS

The simplicity of a copyright is fairly important to managing the huge volumes of original material most organizations produce. Registering a copyright on anything less than a book or movie is too onerous.

As I understand it, a trademark protects you from someone else actually stealing your name, as opposed someone trading on your name. They are not pretending to be you, or using your name to describe another organization, they are, instead, pretending your organization endorses or supports their work.

My personal inclination is that you should fully enforce your ownership and enforce “fair use” and “crediting” standards. As I understand it, in the eyes of the law, failure to enforce is tantamount to permission once it can be established that the owner of the copyright is aware of the infringement. The use of your logo is absolutely verboten except when legitimately referencing your organization...but not trading on its “good name.”
The following links have information on Fair Use:
[http://www.copyright.gov/fls/fl102.html]
[http://www.nolo.com/legal-encyclopedia/fair-use-rule-copyright-material-30100.html]

Furthermore, the following link is a Google search with a lot of resources on Crediting: [http://bit.ly/1rDQZ9X]

Your organization may not choose to declare a copyright or trademark, but this does not necessarily mean your rights are limited. A college professor was recently fired and sued for plagiarizing a student’s work. Students do not copyright their work, and yet they own it. This illustrates that a work that exists prior to the plagiarism and can be traced to the owner/author is still owned by the owner/author. It’s a harder struggle, but being able to trace the origins of a work and subsequent “unfair” use by another party is quite compelling.

Disclaimer: I am not an attorney or a CPA. All comments shared are opinions only, and they are not, nor should they be construed to be counsel. Please seek counsel from an attorney or CPA.”

Dean Suhr

MLD Foundation

“In addition to putting the copyright notice on all materials, including the footer of each web page, I would also suggest that organizations consider having a usage/reference policy in their websites’ terms of use. We find that having things written down makes it easier to respond to requests, and certainly makes it easier to enforce/notify if someone is stealing/violating/infringing because the policy is written and we can show it pre-dates the infringement (notice that we keep a revision history on that page as well).

Our [http://mldfoundation.org/legal-tm.html Legal and Trademark page] on our website has the following sections:
- Copying, Pasting, and Copyrights
- Linking & iFrames (re-purposing our website pages)
- Trademarks (note that for clarity we list/show our trademark phrases and logo)

You are welcome to copy any use any and all information on our legal & trademarks page for your own organization(s).

Families, and even some organizations, often copy our disease descriptions word for word to their site. Their hearts are good in terms of education and awareness, but that' simply the wrong approach. We often do a Google search for some key phrases we have embedded in the disease description to find violators.

It is very import that you notify all infringers in writing; frankly, it's less important from a legal perspective if a family infringer actually removes the content than it is if it's another organization or company, but your obligation is to treat all infringers equally and you must notify them all -- otherwise an infringing organization could say you are selective about, or not, protecting your ownership rights.

Second to our disease description and research updates, the most commonly copied MLD item is our logo butterfly. Often it's for private fundraisers (or tattoos!). They equate, thanks to our hard work, our butterfly logo with the disease so it makes sense to them. We usually will grant permission to use the butterfly, as long as our URL and the copyright symbol are both present - and where possible, we try to keep the branding colors intact, too. We often give use permission for private fundraisers as long as they make it clear that donations are not coming to us and are not tax deductible - this builds awareness & credibility of our organization, strengthens relationships, and often nets us some direct or indirect donations.

Some ask how we can copyright a butterfly ... take a close look and you will see this is not an ordinary butterfly. It has faces in the bottom of each wing. See [http://mldfoundation.org/logo.html story here], and at the following link you can view a large version of the butterfly: [http://mldfoundation.org/images/MLDlogo purple butterflylarge.gif]. Notice how we, in a more subtle way than on the legal and trademark page, have also reiterated portions of the usage rules on this page (note that generally it's not a good idea to have a policy printed in two places, unless you are very careful to maintain consistency).”

==Publicity Opportunities==

Several groups have been approached about being featured on a program entitled "INSIGHTS," a show hosted by Hugh Downs and aired on Discovery Health. Many groups report that after talking with individuals associated with the program, they learned that groups are asked to pay ~$22,000 to $25,000 to be featured.

''[This paragraph submitted by Dean Suhr, [http://MLDfoundation.org MLD Foundation] Oct-09'' In short, Insights offers to produce a professional video and then have 400 national TV placements on Discovery Health, PBS, CNBC, Fox News, CNN, etc. But each market is one placement so your piece will likely play only once to a given audience. You are essentially left with a very expensive professional video. Probably not a good cost/benefit ratio for most foundations. They were careful with me to describe PBS as a potential distribution channel, not an affiliate - others have described being told they were part of PBS. You can see the sales documents and contracts on their website: [http://www.insightshd.com Insights], click on the Medical Picture (upper left), Scroll down the left column and click on the "Special Invitation" key and enter Username: guest Password: 2009

A response from PBS (who the program claims it is affiliated with) stated:

PBS is not affiliated with this program.

There is some information about companies making similar claims or offers to the one you received under the [http://www.pbs.org/aboutpbs/aboutpbs_faqs.html Frequently Asked Questions] section of the PBS Web site. Scroll down to the heading “Other Frequently Asked Questions.” You’ll see several questions regarding situations that are similar to the one you described in your message.

Here is the [http://www.pbs.org/aboutpbs/aboutpbs_faqanswers.html#paradigm answer] PBS posted:

PBS wishes to clarify that it is not associated with and does not endorse, distribute programming for, review underwriting for or otherwise have any business relationship with the following production companies: VM Television, Vision Media Television, Paradigm Media Group, PMG, PMGTV, Infinity Media Group, Roadshow Productions, Family Television Studios, United Media Communications Group, American Review TV, Business Break TV, Event Media TV, or Global Television Studios. PBS does not oversee the production or distribution of any programs associated with any of these companies.

If you are solicited by a production company that claims or implies an association with PBS, please notify [http://www.pbs.org/aboutsite/aboutsite_emailform.html PBS].

====Public Relations====
Good public relations (PR) is key to getting upcoming research and advocacy viewpoints into a wider professional and public arena. Some forums for PR projects may focus on community newspapers, setting up and managing social network sites (Facebook, Twitter, Volunteerspot, Foursquare, Youtube, etc.), press releases about your research or upcoming events, and documentary style interviews with key participants and staff. These help you share what is going on within your organization while also opening the dialogue between the members of the public and specific field.

Assembling a PR team, whether it is through a student run university organization/class or a professional team can offer assistance with interfacing with the media. While student run projects can be a more cost efficient option because they are more likely to offer their services for free or at low cost, the time commitment they can offer may not support all of your organization's needs. You also may have to devote more time to informing them about your organization and making sure projects are wrapped up in a meaningful and useful way by the time their project concludes. Hiring a professional team allows you to devote less time to guiding them through the process as well as guarantees greater time commitment to support ongoing PR projects. The downside to hiring a team is that their services can be quite expensive. When deciding between your PR options, you must weigh the needs of your organization and the cost that it would incur, both financially and for those responsible for interacting with the PR agency.

==National Awareness Days==
Information on creating a national awareness day for rare diseases that do not already have an official day.
[[National Awareness Day]]

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Building a Website]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[National Awareness Day]]
*[[People and Roles]]
*[[Recruiting]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Social Networking]]
*[[Taking Credit Cards on the Web]]

Publicity and General Media

2018-08-01T15:58:12Z

Aguise: /* Getting the Media Interested */

Publicity is a much sought after, and sometimes elusive, avenue to building membership. For organizations just starting out, and even those already established, it is important to be constantly aware of opportunities for publicity and to learn to create these opportunities.

Everything you do is an opportunity for publicity. Start small, and be aware that even a new angle on an old activity might prove newsworthy. Regularly announce meetings to the local papers and radio stations. Invite reporters and photographers to your events. Make these events personal—with the permission of a person involved in the activity, highlight his or her participation. You can also get information into the local media without paying for space by submitting a calendar item or press release.

==Publicity and General Media==
:Patrick Terry, PXE International

"In our first few years, we were pretty desperate for ways to get publicity so that we could find new members. So we cooked up this scheme—we'd announce a meeting for affected individuals—before there was a meeting planned! Thus the newspaper or radio in Anytown, Anywhere would carry the calendar item for free and we'd get phone calls from people with PXE! If there were only a few people, we'd plan a meeting for another time, or a regional meeting, to combine several cities. In the cases where a large number of individuals emerged, we'd have a meeting in someone's home or a church hall and grow our membership at the same time we provided support. PXE International knew that as an organization representing a very rare condition we'd have to be very creative!

Another method: having planned a dinner dance, PXE International negotiated free billboard space on the central expressway in Boston—instead of emphasizing the dance, they used the event to again attract members. The billboard read, "Dinner Dance for Pseudoxanthoma Elasticum (PXE). Call 781-784-3817." People familiar with PXE driving by the billboard reported almost driving off the road with surprised delight that someone knew of their condition."

Another way to do this is to submit a press release. A press release—more properly called a news release—gives a brief description of a new event, discovery, or achievement, and then provides a short description of your organization with contact information. You can use wire services to distribute these releases, which newspapers then pick up as source material for articles or as notes for future articles.

Wire services also distribute calendars that indicate when information needs to be submitted to publishers in consideration of special calendar dates, such as holidays. If you plan events in conjunction with holidays or have other ways to tie your organization to a holiday, you can coordinate a news release with this editorial calendar to increase the impact of your release.

You can contact major media outlets more directly with your story—look for radio, newspaper, and television connections. Do you have a member who has an interesting story? Does one of your members do something incidental to the condition, but the condition can be mentioned as a part of the story? Is the individual or family willing and ready to go public with their story? Your story is interesting, and news outlets are eager to tell it, you just need to connect with the media. Does someone in your organization have media experience?

Be sure to let media know about every event you create, including all your fundraisers and meetings. Don't just alert them. Give them a press kit, educational information, contacts they can use for interviews, and story angles. Relate your event to other newsworthy items wherever possible. A media report on gene therapy, the Human Genome Project, and all kinds of studies and discoveries can use a human interest story—you just need to show the publications the connection between the big event and your condition. The media rely on personal examples to help flesh out the human dimensions of these stories for readers, and your organization can help them while getting visibility for itself.

That said, do not compromise the safety or comfort of your members just to get some air time. Make sure you know the implications—particularly when affected individuals and their families are being interviewed or having their pictures used. There are, at present, no federal protections in place for genetic discrimination in employment or insurance, so be sure that interviewees are not risking discrimination by being public about the condition—and that they understand the implications of participating.

==Getting the Media Interested==

Whether it's to increase awareness of your organization or to seek funding, it's important to be able to offer a quick sound bite about your organization that will capture an individual's attention and get the media interested.

Another way to get the media interested is to include stories in small, hometown newspapers.

:Beth Anderson, Founder, Executive Director, and President of the Board
:PAGER Association

"As part of a big awareness campaign, we want to get stories about our members placed in their hometown newspapers. We don't have time to do the placement work or write articles ourselves, so we put out a plea for volunteers. Most small newspapers will take human interest/first-person medical articles from independent writers.

Our ad was for a "virtual" opportunity, which means the volunteer can work from home. We titled it "Amateur Journalist" and said we would match them up with a family that wants to be interviewed. I sent out instructions with each match, telling them how to work together to place the story in small newspapers where the family lives.

We got dozens of responses from writers who answered our volunteer announcement on VolunteerMatch.com. In fact, the response was overwhelming, and we had to take the announcement down after just a few days."

You should also be aware that the media are looking to hook their audience as surely as you are looking to hook the media. For human-interest stories of good deeds or with good outcomes, this can be a very helpful thing. But understand that the media may also find a less than flattering angle, particularly if there is controversy surrounding some aspect of your condition or the research or treatment for it. Understand that the media usually illustrate controversy by focusing on two extreme and diametrically opposed opinions—and this could create a negative impression for your organization or your condition. Know what your interviewees will say, and work with all members who have media contact to agree on a strategy for that contact—a party line, so to speak. You may want to have a half page of "talking points" about the condition and your organization for the person being interviewed. Keep in mind that the media organizations are all in business to make news and not necessarily to educate the public or fulfill the goals of your organization.

==Creative Ways to Get Your Message Out==
:Wendy Hubbard
:PXE International

"Also look for any related story or letter in popular magazines and newspapers. When Prevention Magazine ran a story on the importance of walking to ease cramping in calves caused by low blood flow, PXE International wrote a letter, and asked my permission to submit it with my name as the author. The letter thanked the magazine for the article and mentioned how I had sent it to PXE international to tell them how great Prevention Magazine is. The result for PXE International was 10 new members—all of whom read the article and learned about us!"

==Press Release Service==

'''Question:'''
How does your organization send out press releases? Are there services that offer this free of charge? Have your organizations ever paid for a service?

'''Answer:'''
We pay for a VOCUS service, which is part of PR http://www.vocus.com/pricing/#compare

We are allowed distribution of five press releases a month, social media monitoring, some help with writing and pay $2,500 per year. (Please don't reveal our rate to them) It is a wonderful option as we do all our own work ourselves whenever possible and very seldom hire consultants or pay for services.
We needed something semi robust since we have a large undiagnosed base. What is VERY important is to do some extremely hard negotiation with companies such as this as they will try to sell you their biggest PR kit, which most likely won't be used. You never want to use PR extensively, just when there is a major event or when you make news about the organization. If your organization is anything like ours, we are very tight with the dollar…and tough negotiation is absolutely essential to get twice as much with so very little.

When writing our press releases, we do pass them by those in our base who are journalists, so they can clean them up for us.
The social media aspect is so very important because that also shows up on Google … to keep it fresh every single day… as far as the website, put as many relevant links as you can so you can be in the top five discussing your mission!

==Pre Publicity Considerations==

Be sure to assess the type and amount of publicity your organization wants. Research your possible avenues carefully. Here are some good resources and points to consider when starting to plan:

*[[Preparing for and Handling Publicity]]

At times your organization may receive requests from individuals who are fundraising for a specific person, or for personal expenses. While there are some nonprofit organizations, such as HelpHopeLive, whose mission is to aid families with covering their own medical expenses by raising philanthropic dollars, there are many organizations that may feel this could result in the loss of their 501(c)(3) status and the misrepresentation of their mission, logo, or website. However, there are ways to protect your organization’s mark. For example, Genetic Alliance and PXE International keep their marks protected for free by using the trademark website [http://www.uspto.gov/trademarks/teas/ TEAS].

Jim Moore

AXYS

“Copyright often is more of a declaration than formal registration of ownership.
A trademark is slightly different. AXYS trademarked its name/logo, and we registered the trademark. We paid over $700 to research and register the trademark, and that was only a fraction of the true cost, most of which was donated as pro-bono services.

Meanwhile to copyright your material, you can go through a formal process, but few do that. Instead, you simply declare it with the symbol and statement. I worked in television, and we copyrighted every newscast, and all other media respected the copyright, or risked vigorous litigation. We never registered those copyrights; we produced about 8 to 10 live shows per day.
For Example:
© Copyright 2014...all rights reserved. (The copyright symbol is in your symbols font.)

Our website contains a simpler statement: Copyright 2014 by AXYS

The simplicity of a copyright is fairly important to managing the huge volumes of original material most organizations produce. Registering a copyright on anything less than a book or movie is too onerous. The site, [http://zoo.mn/1sYCjsv], illustrates how one can register a copyright.

As I understand it, a trademark protects you from someone else actually stealing your name, as opposed someone trading on your name. They are not pretending to be you, or using your name to describe another organization, they are, instead, pretending your organization endorses or supports their work.

My personal inclination is that you should fully enforce your ownership and enforce “fair use” and “crediting” standards. As I understand it, in the eyes of the law, failure to enforce is tantamount to permission once it can be established that the owner of the copyright is aware of the infringement. The use of your logo is absolutely verboten except when legitimately referencing your organization...but not trading on its “good name.”
The following links have information on Fair Use:
[http://www.copyright.gov/fls/fl102.html]
[http://www.nolo.com/legal-encyclopedia/fair-use-rule-copyright-material-30100.html]

Furthermore, the following link is a Google search with a lot of resources on Crediting: [http://bit.ly/1rDQZ9X]

Your organization may not choose to declare a copyright or trademark, but this does not necessarily mean your rights are limited. A college professor was recently fired and sued for plagiarizing a student’s work. Students do not copyright their work, and yet they own it. This illustrates that a work that exists prior to the plagiarism and can be traced to the owner/author is still owned by the owner/author. It’s a harder struggle, but being able to trace the origins of a work and subsequent “unfair” use by another party is quite compelling.

Disclaimer: I am not an attorney or a CPA. All comments shared are opinions only, and they are not, nor should they be construed to be counsel. Please seek counsel from an attorney or CPA.”

Dean Suhr

MLD Foundation

“In addition to putting the copyright notice on all materials, including the footer of each web page, I would also suggest that organizations consider having a usage/reference policy in their websites’ terms of use. We find that having things written down makes it easier to respond to requests, and certainly makes it easier to enforce/notify if someone is stealing/violating/infringing because the policy is written and we can show it pre-dates the infringement (notice that we keep a revision history on that page as well).

Our [http://mldfoundation.org/legal-tm.html Legal and Trademark page] on our website has the following sections:
- Copying, Pasting, and Copyrights
- Linking & iFrames (re-purposing our website pages)
- Trademarks (note that for clarity we list/show our trademark phrases and logo)

You are welcome to copy any use any and all information on our legal & trademarks page for your own organization(s).

Families, and even some organizations, often copy our disease descriptions word for word to their site. Their hearts are good in terms of education and awareness, but that' simply the wrong approach. We often do a Google search for some key phrases we have embedded in the disease description to find violators.

It is very import that you notify all infringers in writing; frankly, it's less important from a legal perspective if a family infringer actually removes the content than it is if it's another organization or company, but your obligation is to treat all infringers equally and you must notify them all -- otherwise an infringing organization could say you are selective about, or not, protecting your ownership rights.

Second to our disease description and research updates, the most commonly copied MLD item is our logo butterfly. Often it's for private fundraisers (or tattoos!). They equate, thanks to our hard work, our butterfly logo with the disease so it makes sense to them. We usually will grant permission to use the butterfly, as long as our URL and the copyright symbol are both present - and where possible, we try to keep the branding colors intact, too. We often give use permission for private fundraisers as long as they make it clear that donations are not coming to us and are not tax deductible - this builds awareness & credibility of our organization, strengthens relationships, and often nets us some direct or indirect donations.

Some ask how we can copyright a butterfly ... take a close look and you will see this is not an ordinary butterfly. It has faces in the bottom of each wing. See [http://mldfoundation.org/logo.html story here], and at the following link you can view a large version of the butterfly: [http://mldfoundation.org/images/MLDlogo purple butterflylarge.gif]. Notice how we, in a more subtle way than on the legal and trademark page, have also reiterated portions of the usage rules on this page (note that generally it's not a good idea to have a policy printed in two places, unless you are very careful to maintain consistency).”

==Publicity Opportunities==

Several groups have been approached about being featured on a program entitled "INSIGHTS," a show hosted by Hugh Downs and aired on Discovery Health. Many groups report that after talking with individuals associated with the program, they learned that groups are asked to pay ~$22,000 to $25,000 to be featured.

''[This paragraph submitted by Dean Suhr, [http://MLDfoundation.org MLD Foundation] Oct-09'' In short, Insights offers to produce a professional video and then have 400 national TV placements on Discovery Health, PBS, CNBC, Fox News, CNN, etc. But each market is one placement so your piece will likely play only once to a given audience. You are essentially left with a very expensive professional video. Probably not a good cost/benefit ratio for most foundations. They were careful with me to describe PBS as a potential distribution channel, not an affiliate - others have described being told they were part of PBS. You can see the sales documents and contracts on their website: [http://www.insightshd.com Insights], click on the Medical Picture (upper left), Scroll down the left column and click on the "Special Invitation" key and enter Username: guest Password: 2009

A response from PBS (who the program claims it is affiliated with) stated:

PBS is not affiliated with this program.

There is some information about companies making similar claims or offers to the one you received under the [http://www.pbs.org/aboutpbs/aboutpbs_faqs.html Frequently Asked Questions] section of the PBS Web site. Scroll down to the heading “Other Frequently Asked Questions.” You’ll see several questions regarding situations that are similar to the one you described in your message.

Here is the [http://www.pbs.org/aboutpbs/aboutpbs_faqanswers.html#paradigm answer] PBS posted:

PBS wishes to clarify that it is not associated with and does not endorse, distribute programming for, review underwriting for or otherwise have any business relationship with the following production companies: VM Television, Vision Media Television, Paradigm Media Group, PMG, PMGTV, Infinity Media Group, Roadshow Productions, Family Television Studios, United Media Communications Group, American Review TV, Business Break TV, Event Media TV, or Global Television Studios. PBS does not oversee the production or distribution of any programs associated with any of these companies.

If you are solicited by a production company that claims or implies an association with PBS, please notify [http://www.pbs.org/aboutsite/aboutsite_emailform.html PBS].

====Public Relations====
Good public relations (PR) is key to getting upcoming research and advocacy viewpoints into a wider professional and public arena. Some forums for PR projects may focus on community newspapers, setting up and managing social network sites (Facebook, Twitter, Volunteerspot, Foursquare, Youtube, etc.), press releases about your research or upcoming events, and documentary style interviews with key participants and staff. These help you share what is going on within your organization while also opening the dialogue between the members of the public and specific field.

Assembling a PR team, whether it is through a student run university organization/class or a professional team can offer assistance with interfacing with the media. While student run projects can be a more cost efficient option because they are more likely to offer their services for free or at low cost, the time commitment they can offer may not support all of your organization's needs. You also may have to devote more time to informing them about your organization and making sure projects are wrapped up in a meaningful and useful way by the time their project concludes. Hiring a professional team allows you to devote less time to guiding them through the process as well as guarantees greater time commitment to support ongoing PR projects. The downside to hiring a team is that their services can be quite expensive. When deciding between your PR options, you must weigh the needs of your organization and the cost that it would incur, both financially and for those responsible for interacting with the PR agency.

==National Awareness Days==
Information on creating a national awareness day for rare diseases that do not already have an official day.
[[National Awareness Day]]

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Building a Website]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[National Awareness Day]]
*[[People and Roles]]
*[[Recruiting]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Social Networking]]
*[[Taking Credit Cards on the Web]]

Youth to Adult Transition Issues

2018-08-01T15:49:28Z

Aguise: /* Transition Resources */

Major life changes such as going to or from a school environment are a crucial issue for members of many advocacy groups. Here are some resources that may help individuals negotiate these changes.

==PEATC (Parent Educational Advocacy Training Center)==

PEATC is Virginia's Parent Training Institute and Parent Information Resource Center. I work specifically with our RSA (Rehabilitation Services Administration) grant on Transitions, building a foundation of resources and trainings around the process of transitioning students with special needs from high school to "life." (including the four major areas of employment, post-secondary ed, training, independent living skills-where appropriate)

PEATC in partnership with Virginia Commonwealth University's Rehabilitation Research and Training Center has developed a FREE three part webinar series devoted to laying the foundations of understanding in the transition process for students with disabilities, their families, educators and adult service providers. While PEATC is Virginia's PTI and PIRC, the transition information is based upon IDEA (Individuals with Disabilities Education Act) and can be transferable/useful across the US. The webinars have rolling registration, will stream on March 3, 10, 17 at 2pm EST. You may access the archived material at [http://www.peatc.org/peatc.cgim?template=on_demand_webinar_training].

Knowing genetic condition and learning disability went hand in hand with our daughter, my hope is for you to pass along this information to families within your organizations and other service providers who may benefit from this free information. Please see attachments for full webinar details and registration.

-Catherine Burzio

The George Washington University offers an IEP Checklist iPhone app. School aged students with disabilities are provided an Individualized Education Program (IEP) designed to support their unique educational needs. The [https://www.heath.gwu.edu/iep-checklist-iphone-app-phone-app IEP Checklist App] helps parents of students with special needs become better-informed advocates by making IEP information easier to access. The newest version of the app has active links to the relevant language in the federal regulations; allows users to record the IEP meeting or record notes; and has the capacity to print out notes and click on a checklist as requested items are discussed.

==Transition Resources==

*[https://www.autismspeaks.org/family-services/tool-kits/transition-tool-kit Autism Speaks Transition Tool Kit] is a free online tool that serves as a guide to assist families on the journey from adolescence to adulthood and includes sections on self-advocacy, community living, post-secondary educational opportunities, housing, and internet & technology. It also describes specific timelines of the transition processes for each state. Families of adolescents and young adults with autism between the ages of 14 and 22 can request a complementary hard copy [http://events.autismspeaks.org/site/c.jqLTI1OxGlF/b.6546161/k.96F7/Transition_Tool_Kit_Request/apps/ka/ct/contactus.asp?c=jqLTI1OxGlF&b=6546161&en=dkLUK5MHKdLYI8OHKdLRI1MIIfKQKbOWLkJYJ7OOLhKZLlP6F here].

*[https://www.ctdinstitute.org/library/2014-10-20/family-information-guide-assistive-technology-and-transition-planning The Family Information Guide to Assistive Technology and Transition Planning] is now available free of charge from the Family Center on Technology and Disability (FCTD). The FCTD is a national organization that produces and distributes information on assistive and instructional technologies. Assistive technology can be anything from a simple device to make holding a pencil easier to a sophisticated computer. This 50-page guide is aimed at providing families with the information they need to effectively prepare for and participate in periods of transition in their children's lives and includes sections on Assistive Technology, Transition Planning, Laws governing accommodations in school settings, and a Glossary of assistive technology terms and resources. Order a free copy [http://www.fctd.info/show/order_guides here].

*[http://www.ncwd-youth.info/publications/making-the-move-to-managing-your-own-personal-assistance-services-pas-a-toolkit-for-youth-with-disabilities-transitioning-to-adulthood/ Making the Move to Managing Your Own Personal Assistance Services (PAS): A Toolkit for Youth Transitioning to Adulthood] - Through its Youth Technical Assistance Center, the National Collaborative on Workforce and Disability-Youth (ODEP) is releasing Making the Move to Managing Your Own Personal Assistance Services (PAS): A Toolkit for Youth Transitioning to Adulthood. Whether moving from school or a home setting to work, college, or living on their own, transition-age youth with significant disabilities and their families or friends will benefit from the information in the toolkit. Accessing and maintaining long-term supports, such as PAS, has been a significant barrier to employment for youth with disabilities. This new toolkit assists youth in strengthening some of the most fundamental skills essential for successfully managing their own PAS: effective communication, time-management, working with others, and establishing professional relationships.

*The [http://www.gottransition.org/ National Health Care Transition Center] works to assure that youth with/without special health care needs receive care in a medical home that provides family-centered/youth activated transition preparation, planned transfers from pediatric to adult health care and respectful partnerships

*[http://iod.unh.edu/Services/professional-development.aspx UNH Institute on Disability] hosted the '''2010 Research to Practice Series: The Pathway from High School to a Career: Promising Strategies, Supports, and Partnerships in Secondary Transition''' in April and May of 2010. The series focused on several unique strategies for developing effective, outcome-based educational experiences that promote the successful transition of students with disabilities and students at risk to their chosen post-secondary experiences. The sessions featured distinct content and objectives, including student-directed models support the development of career goals, sector-based strategies that link high school programs to employers and post-secondary education, ways to use assistive technology to improve educational and employment outcomes, and a school-wide framework that allows educators, parents, and students to utilize the emphasized high school reform. The individual workshops were entitled: '''Assistive Technology and Transition''' and '''High School is Transition: A Framework for Reform that Allows Schools to Educate All Students'''.

== Resources Created for Youth by Youth ==

National Kids As Self Advocates (KASA) is pleased to announce three new articles and six new youth written and peer-reviewed tip-sheets. KASA is also pleased to offer a toolkit for students, school administration and paraprofessionals (one-on-one aides in the classroom) on creating a good working relationship with a paraprofessional.

Find KASA Articles at: [http://fvkasa.org/reports/index.php http://fvkasa.org/reports/index.php]

Find youth written and peer-reviewed tip-sheets at: [http://fvkasa.org/resources/index.php http://fvkasa.org/resources/index.php]

Or stay current with what’s new at: [http://fvkasa.org/about/whatsnew.php http://fvkasa.org/about/whatsnew.php]

Order the Paraprofessional Toolkit or watch the Webinar/Teleconference sharing about the toolkit on KASA’s main page at: [http://www.fvkasa.org http://www.fvkasa.org]

NEW Articles:

*[http://fvkasa.org/reports/journey.php Bryan's Odyssey: The Story of a Journey] by Bryan Dooley
*[http://fvkasa.org/reports/interdependence.php Using Interdependence] by Micah Fialka-Feldman
*[http://fvkasa.org/reports/surviving.php My Story About Surviving A Hospital Stay] by Sunjay Smith

NEW Youth Created Tip-sheets:

*[http://fvkasa.org/resources/files/history-awareness.php Awareness Through Networking]
This tip sheet will give you advice on how to network, or connect with new people, so that you can teach them about and make them more comfortable with your disability. The more people know about disabilities as a whole, the more disability awareness is spread.

*[http://fvkasa.org/resources/files/ed-college.php Tips For Surviving Your Freshman Year of College]
The transition from high school to college can be hard but fun. In college you have a lot more responsibility to make sure you get what you need. This tip sheet shares what you need to know to survive (and have fun) in your first year of college.

*[http://fvkasa.org/resources/files/history-pride.php Disability Pride: What is it? How can we express it?]
Disability Pride is an important part of advocacy. Wondering how you can have Disability Pride? Read this to learn about the three parts of disability pride; acceptance, community and history and ways to show your pride.

*[http://fvkasa.org/resources/files/cil.php What is a Center for Independent Living?]
Check out this info sheet to learn more about what CILs do and the many ways they can help you.

*[http://fvkasa.org/resources/files/communityservice.php Getting Involved in Doing Community Service]
Check out this tip-sheet for tips, stories and resources about how you can volunteer in your community.

*[http://fvkasa.org/resources/files/ed-funding%20higher%20ed.09.php Funding Higher Education]
Whether you are in grammar school and the word “college” isn’t even in your vocabulary or in high school preparing for college, it is never too late (or too early) to start looking for funds. “Where do I start?” you may wonder. There are many resources available. Check out this tip sheet for ideas and resources on funding college.

==Internal Links==
*[[Autopsies and Tissue Collection]]
*[[Best Practices]]
*[[Conferences, Workshops, and Meetings for Affected Individuals]]
*[[Connecting Individuals]]
*[[Dealing with Death]]
*[[Internet Services]]
**[[Internet Services: Mailing Lists|Mailing Lists]]
**[[Internet Services: Websites, Chat Rooms, and Newsgroups|Websites, Chat Rooms, and Newsgroups]]
*[[Phone Services: Going Beyond the Phone Tree|Phone Services]]
*[[Protecting Member Privacy]]
*[[Setting Up A National Conference]]
*[[Support for Individuals and Families]]

Youth to Adult Transition Issues

2018-08-01T15:45:37Z

Aguise: /* Transition Resources */

Major life changes such as going to or from a school environment are a crucial issue for members of many advocacy groups. Here are some resources that may help individuals negotiate these changes.

==PEATC (Parent Educational Advocacy Training Center)==

PEATC is Virginia's Parent Training Institute and Parent Information Resource Center. I work specifically with our RSA (Rehabilitation Services Administration) grant on Transitions, building a foundation of resources and trainings around the process of transitioning students with special needs from high school to "life." (including the four major areas of employment, post-secondary ed, training, independent living skills-where appropriate)

PEATC in partnership with Virginia Commonwealth University's Rehabilitation Research and Training Center has developed a FREE three part webinar series devoted to laying the foundations of understanding in the transition process for students with disabilities, their families, educators and adult service providers. While PEATC is Virginia's PTI and PIRC, the transition information is based upon IDEA (Individuals with Disabilities Education Act) and can be transferable/useful across the US. The webinars have rolling registration, will stream on March 3, 10, 17 at 2pm EST. You may access the archived material at [http://www.peatc.org/peatc.cgim?template=on_demand_webinar_training].

Knowing genetic condition and learning disability went hand in hand with our daughter, my hope is for you to pass along this information to families within your organizations and other service providers who may benefit from this free information. Please see attachments for full webinar details and registration.

-Catherine Burzio

The George Washington University offers an IEP Checklist iPhone app. School aged students with disabilities are provided an Individualized Education Program (IEP) designed to support their unique educational needs. The [https://www.heath.gwu.edu/iep-checklist-iphone-app-phone-app IEP Checklist App] helps parents of students with special needs become better-informed advocates by making IEP information easier to access. The newest version of the app has active links to the relevant language in the federal regulations; allows users to record the IEP meeting or record notes; and has the capacity to print out notes and click on a checklist as requested items are discussed.

==Transition Resources==

*[https://www.autismspeaks.org/family-services/tool-kits/transition-tool-kit Autism Speaks Transition Tool Kit] is a free online tool that serves as a guide to assist families on the journey from adolescence to adulthood and includes sections on self-advocacy, community living, post-secondary educational opportunities, housing, and internet & technology. It also describes specific timelines of the transition processes for each state. Families of adolescents and young adults with autism between the ages of 14 and 22 can request a complementary hard copy [http://events.autismspeaks.org/site/c.jqLTI1OxGlF/b.6546161/k.96F7/Transition_Tool_Kit_Request/apps/ka/ct/contactus.asp?c=jqLTI1OxGlF&b=6546161&en=dkLUK5MHKdLYI8OHKdLRI1MIIfKQKbOWLkJYJ7OOLhKZLlP6F here].

*[https://www.ctdinstitute.org/library/2014-10-20/family-information-guide-assistive-technology-and-transition-planning The Family Information Guide to Assistive Technology and Transition Planning] is now available free of charge from the Family Center on Technology and Disability (FCTD). The FCTD is a national organization that produces and distributes information on assistive and instructional technologies. Assistive technology can be anything from a simple device to make holding a pencil easier to a sophisticated computer. This 50-page guide is aimed at providing families with the information they need to effectively prepare for and participate in periods of transition in their children's lives and includes sections on Assistive Technology, Transition Planning, Laws governing accommodations in school settings, and a Glossary of assistive technology terms and resources. Order a free copy [http://www.fctd.info/show/order_guides here].

*[http://www.ncwd-youth.info/publications/making-the-move-to-managing-your-own-personal-assistance-services-pas-a-toolkit-for-youth-with-disabilities-transitioning-to-adulthood/ Making the Move to Managing Your Own Personal Assistance Services (PAS): A Toolkit for Youth Transitioning to Adulthood] - Through its Youth Technical Assistance Center, the National Collaborative on Workforce and Disability-Youth (ODEP) is releasing Making the Move to Managing Your Own Personal Assistance Services (PAS): A Toolkit for Youth Transitioning to Adulthood. Whether moving from school or a home setting to work, college, or living on their own, transition-age youth with significant disabilities and their families or friends will benefit from the information in the toolkit. Accessing and maintaining long-term supports, such as PAS, has been a significant barrier to employment for youth with disabilities. This new toolkit assists youth in strengthening some of the most fundamental skills essential for successfully managing their own PAS: effective communication, time-management, working with others, and establishing professional relationships.

*The [http://www.gottransition.org/ National Health Care Transition Center] works to assure that youth with/without special health care needs receive care in a medical home that provides family-centered/youth activated transition preparation, planned transfers from pediatric to adult health care and respectful partnerships

*[http://iod.unh.edu/Services/professional-development.aspx UNH Institute on Disability] hosted the '''2010 Research to Practice Series: The Pathway from High School to a Career: Promising Strategies, Supports, and Partnerships in Secondary Transition''' in April and May of 2010. The series focused on several unique strategies for developing effective, outcome-based educational experiences that promote the successful transition of students with disabilities and students at risk to their chosen post-secondary experiences. The sessions featured distinct content and objectives, including student-directed models support the development of career goals, sector-based strategies that link high school programs to employers and post-secondary education, ways to use assistive technology to improve educational and employment outcomes, and a school-wide framework that allows educators, parents, and students to utilize the emphasized high school reform. The individual workshops were entitled: '''Assistive Technology and Transition''' and '''High School is Transition: A Framework for Reform that Allows Schools to Educate All Students'''.

*[http://www.fyitransition.net/Minicourses/health/level1/player.html Video on Staying Healthy for Youth in Transition] - This video explains to young people with medical conditions or disabilities the importance of taking care of their health as they transition into adulthood and take responsibility for themselves. Includes information on taking medicines, talking with doctors, carrying an emergency health information card, keeping a health care notebook, paying for health care, going to college and planning for accommodations, eating the right foods, exercising and more.

== Resources Created for Youth by Youth ==

National Kids As Self Advocates (KASA) is pleased to announce three new articles and six new youth written and peer-reviewed tip-sheets. KASA is also pleased to offer a toolkit for students, school administration and paraprofessionals (one-on-one aides in the classroom) on creating a good working relationship with a paraprofessional.

Find KASA Articles at: [http://fvkasa.org/reports/index.php http://fvkasa.org/reports/index.php]

Find youth written and peer-reviewed tip-sheets at: [http://fvkasa.org/resources/index.php http://fvkasa.org/resources/index.php]

Or stay current with what’s new at: [http://fvkasa.org/about/whatsnew.php http://fvkasa.org/about/whatsnew.php]

Order the Paraprofessional Toolkit or watch the Webinar/Teleconference sharing about the toolkit on KASA’s main page at: [http://www.fvkasa.org http://www.fvkasa.org]

NEW Articles:

*[http://fvkasa.org/reports/journey.php Bryan's Odyssey: The Story of a Journey] by Bryan Dooley
*[http://fvkasa.org/reports/interdependence.php Using Interdependence] by Micah Fialka-Feldman
*[http://fvkasa.org/reports/surviving.php My Story About Surviving A Hospital Stay] by Sunjay Smith

NEW Youth Created Tip-sheets:

*[http://fvkasa.org/resources/files/history-awareness.php Awareness Through Networking]
This tip sheet will give you advice on how to network, or connect with new people, so that you can teach them about and make them more comfortable with your disability. The more people know about disabilities as a whole, the more disability awareness is spread.

*[http://fvkasa.org/resources/files/ed-college.php Tips For Surviving Your Freshman Year of College]
The transition from high school to college can be hard but fun. In college you have a lot more responsibility to make sure you get what you need. This tip sheet shares what you need to know to survive (and have fun) in your first year of college.

*[http://fvkasa.org/resources/files/history-pride.php Disability Pride: What is it? How can we express it?]
Disability Pride is an important part of advocacy. Wondering how you can have Disability Pride? Read this to learn about the three parts of disability pride; acceptance, community and history and ways to show your pride.

*[http://fvkasa.org/resources/files/cil.php What is a Center for Independent Living?]
Check out this info sheet to learn more about what CILs do and the many ways they can help you.

*[http://fvkasa.org/resources/files/communityservice.php Getting Involved in Doing Community Service]
Check out this tip-sheet for tips, stories and resources about how you can volunteer in your community.

*[http://fvkasa.org/resources/files/ed-funding%20higher%20ed.09.php Funding Higher Education]
Whether you are in grammar school and the word “college” isn’t even in your vocabulary or in high school preparing for college, it is never too late (or too early) to start looking for funds. “Where do I start?” you may wonder. There are many resources available. Check out this tip sheet for ideas and resources on funding college.

==Internal Links==
*[[Autopsies and Tissue Collection]]
*[[Best Practices]]
*[[Conferences, Workshops, and Meetings for Affected Individuals]]
*[[Connecting Individuals]]
*[[Dealing with Death]]
*[[Internet Services]]
**[[Internet Services: Mailing Lists|Mailing Lists]]
**[[Internet Services: Websites, Chat Rooms, and Newsgroups|Websites, Chat Rooms, and Newsgroups]]
*[[Phone Services: Going Beyond the Phone Tree|Phone Services]]
*[[Protecting Member Privacy]]
*[[Setting Up A National Conference]]
*[[Support for Individuals and Families]]

Youth to Adult Transition Issues

2018-08-01T15:38:19Z

Aguise: /* Transition Resources */

Major life changes such as going to or from a school environment are a crucial issue for members of many advocacy groups. Here are some resources that may help individuals negotiate these changes.

==PEATC (Parent Educational Advocacy Training Center)==

PEATC is Virginia's Parent Training Institute and Parent Information Resource Center. I work specifically with our RSA (Rehabilitation Services Administration) grant on Transitions, building a foundation of resources and trainings around the process of transitioning students with special needs from high school to "life." (including the four major areas of employment, post-secondary ed, training, independent living skills-where appropriate)

PEATC in partnership with Virginia Commonwealth University's Rehabilitation Research and Training Center has developed a FREE three part webinar series devoted to laying the foundations of understanding in the transition process for students with disabilities, their families, educators and adult service providers. While PEATC is Virginia's PTI and PIRC, the transition information is based upon IDEA (Individuals with Disabilities Education Act) and can be transferable/useful across the US. The webinars have rolling registration, will stream on March 3, 10, 17 at 2pm EST. You may access the archived material at [http://www.peatc.org/peatc.cgim?template=on_demand_webinar_training].

Knowing genetic condition and learning disability went hand in hand with our daughter, my hope is for you to pass along this information to families within your organizations and other service providers who may benefit from this free information. Please see attachments for full webinar details and registration.

-Catherine Burzio

The George Washington University offers an IEP Checklist iPhone app. School aged students with disabilities are provided an Individualized Education Program (IEP) designed to support their unique educational needs. The [https://www.heath.gwu.edu/iep-checklist-iphone-app-phone-app IEP Checklist App] helps parents of students with special needs become better-informed advocates by making IEP information easier to access. The newest version of the app has active links to the relevant language in the federal regulations; allows users to record the IEP meeting or record notes; and has the capacity to print out notes and click on a checklist as requested items are discussed.

==Transition Resources==

*[https://www.autismspeaks.org/family-services/tool-kits/transition-tool-kit Autism Speaks Transition Tool Kit] is a free online tool that serves as a guide to assist families on the journey from adolescence to adulthood and includes sections on self-advocacy, community living, post-secondary educational opportunities, housing, and internet & technology. It also describes specific timelines of the transition processes for each state. Families of adolescents and young adults with autism between the ages of 14 and 22 can request a complementary hard copy [http://events.autismspeaks.org/site/c.jqLTI1OxGlF/b.6546161/k.96F7/Transition_Tool_Kit_Request/apps/ka/ct/contactus.asp?c=jqLTI1OxGlF&b=6546161&en=dkLUK5MHKdLYI8OHKdLRI1MIIfKQKbOWLkJYJ7OOLhKZLlP6F here].

*[http://www.fctd.info/show/order_guides The Family Information Guide to Assistive Technology and Transition Planning] is now available free of charge from the Family Center on Technology and Disability (FCTD). The FCTD is a national organization that produces and distributes information on assistive and instructional technologies. Assistive technology can be anything from a simple device to make holding a pencil easier to a sophisticated computer. This 50-page guide is aimed at providing families with the information they need to effectively prepare for and participate in periods of transition in their children's lives and includes sections on Assistive Technology, Transition Planning, Laws governing accommodations in school settings, and a Glossary of assistive technology terms and resources. Order a free copy [http://www.fctd.info/show/order_guides here].

*[http://www.ncwd-youth.info/publications/making-the-move-to-managing-your-own-personal-assistance-services-pas-a-toolkit-for-youth-with-disabilities-transitioning-to-adulthood/ Making the Move to Managing Your Own Personal Assistance Services (PAS): A Toolkit for Youth Transitioning to Adulthood] - Through its Youth Technical Assistance Center, the National Collaborative on Workforce and Disability-Youth (ODEP) is releasing Making the Move to Managing Your Own Personal Assistance Services (PAS): A Toolkit for Youth Transitioning to Adulthood. Whether moving from school or a home setting to work, college, or living on their own, transition-age youth with significant disabilities and their families or friends will benefit from the information in the toolkit. Accessing and maintaining long-term supports, such as PAS, has been a significant barrier to employment for youth with disabilities. This new toolkit assists youth in strengthening some of the most fundamental skills essential for successfully managing their own PAS: effective communication, time-management, working with others, and establishing professional relationships.

*The [http://www.gottransition.org/ National Health Care Transition Center] works to assure that youth with/without special health care needs receive care in a medical home that provides family-centered/youth activated transition preparation, planned transfers from pediatric to adult health care and respectful partnerships

*[http://iod.unh.edu/Services/professional-development.aspx UNH Institute on Disability] hosted the '''2010 Research to Practice Series: The Pathway from High School to a Career: Promising Strategies, Supports, and Partnerships in Secondary Transition''' in April and May of 2010. The series focused on several unique strategies for developing effective, outcome-based educational experiences that promote the successful transition of students with disabilities and students at risk to their chosen post-secondary experiences. The sessions featured distinct content and objectives, including student-directed models support the development of career goals, sector-based strategies that link high school programs to employers and post-secondary education, ways to use assistive technology to improve educational and employment outcomes, and a school-wide framework that allows educators, parents, and students to utilize the emphasized high school reform. The individual workshops were entitled: '''Assistive Technology and Transition''' and '''High School is Transition: A Framework for Reform that Allows Schools to Educate All Students'''.

*[http://www.fyitransition.net/Minicourses/health/level1/player.html Video on Staying Healthy for Youth in Transition] - This video explains to young people with medical conditions or disabilities the importance of taking care of their health as they transition into adulthood and take responsibility for themselves. Includes information on taking medicines, talking with doctors, carrying an emergency health information card, keeping a health care notebook, paying for health care, going to college and planning for accommodations, eating the right foods, exercising and more.

== Resources Created for Youth by Youth ==

National Kids As Self Advocates (KASA) is pleased to announce three new articles and six new youth written and peer-reviewed tip-sheets. KASA is also pleased to offer a toolkit for students, school administration and paraprofessionals (one-on-one aides in the classroom) on creating a good working relationship with a paraprofessional.

Find KASA Articles at: [http://fvkasa.org/reports/index.php http://fvkasa.org/reports/index.php]

Find youth written and peer-reviewed tip-sheets at: [http://fvkasa.org/resources/index.php http://fvkasa.org/resources/index.php]

Or stay current with what’s new at: [http://fvkasa.org/about/whatsnew.php http://fvkasa.org/about/whatsnew.php]

Order the Paraprofessional Toolkit or watch the Webinar/Teleconference sharing about the toolkit on KASA’s main page at: [http://www.fvkasa.org http://www.fvkasa.org]

NEW Articles:

*[http://fvkasa.org/reports/journey.php Bryan's Odyssey: The Story of a Journey] by Bryan Dooley
*[http://fvkasa.org/reports/interdependence.php Using Interdependence] by Micah Fialka-Feldman
*[http://fvkasa.org/reports/surviving.php My Story About Surviving A Hospital Stay] by Sunjay Smith

NEW Youth Created Tip-sheets:

*[http://fvkasa.org/resources/files/history-awareness.php Awareness Through Networking]
This tip sheet will give you advice on how to network, or connect with new people, so that you can teach them about and make them more comfortable with your disability. The more people know about disabilities as a whole, the more disability awareness is spread.

*[http://fvkasa.org/resources/files/ed-college.php Tips For Surviving Your Freshman Year of College]
The transition from high school to college can be hard but fun. In college you have a lot more responsibility to make sure you get what you need. This tip sheet shares what you need to know to survive (and have fun) in your first year of college.

*[http://fvkasa.org/resources/files/history-pride.php Disability Pride: What is it? How can we express it?]
Disability Pride is an important part of advocacy. Wondering how you can have Disability Pride? Read this to learn about the three parts of disability pride; acceptance, community and history and ways to show your pride.

*[http://fvkasa.org/resources/files/cil.php What is a Center for Independent Living?]
Check out this info sheet to learn more about what CILs do and the many ways they can help you.

*[http://fvkasa.org/resources/files/communityservice.php Getting Involved in Doing Community Service]
Check out this tip-sheet for tips, stories and resources about how you can volunteer in your community.

*[http://fvkasa.org/resources/files/ed-funding%20higher%20ed.09.php Funding Higher Education]
Whether you are in grammar school and the word “college” isn’t even in your vocabulary or in high school preparing for college, it is never too late (or too early) to start looking for funds. “Where do I start?” you may wonder. There are many resources available. Check out this tip sheet for ideas and resources on funding college.

==Internal Links==
*[[Autopsies and Tissue Collection]]
*[[Best Practices]]
*[[Conferences, Workshops, and Meetings for Affected Individuals]]
*[[Connecting Individuals]]
*[[Dealing with Death]]
*[[Internet Services]]
**[[Internet Services: Mailing Lists|Mailing Lists]]
**[[Internet Services: Websites, Chat Rooms, and Newsgroups|Websites, Chat Rooms, and Newsgroups]]
*[[Phone Services: Going Beyond the Phone Tree|Phone Services]]
*[[Protecting Member Privacy]]
*[[Setting Up A National Conference]]
*[[Support for Individuals and Families]]

Youth to Adult Transition Issues

2018-08-01T15:37:04Z

Aguise: /* PEATC (Parent Educational Advocacy Training Center) */

Major life changes such as going to or from a school environment are a crucial issue for members of many advocacy groups. Here are some resources that may help individuals negotiate these changes.

==PEATC (Parent Educational Advocacy Training Center)==

PEATC is Virginia's Parent Training Institute and Parent Information Resource Center. I work specifically with our RSA (Rehabilitation Services Administration) grant on Transitions, building a foundation of resources and trainings around the process of transitioning students with special needs from high school to "life." (including the four major areas of employment, post-secondary ed, training, independent living skills-where appropriate)

PEATC in partnership with Virginia Commonwealth University's Rehabilitation Research and Training Center has developed a FREE three part webinar series devoted to laying the foundations of understanding in the transition process for students with disabilities, their families, educators and adult service providers. While PEATC is Virginia's PTI and PIRC, the transition information is based upon IDEA (Individuals with Disabilities Education Act) and can be transferable/useful across the US. The webinars have rolling registration, will stream on March 3, 10, 17 at 2pm EST. You may access the archived material at [http://www.peatc.org/peatc.cgim?template=on_demand_webinar_training].

Knowing genetic condition and learning disability went hand in hand with our daughter, my hope is for you to pass along this information to families within your organizations and other service providers who may benefit from this free information. Please see attachments for full webinar details and registration.

-Catherine Burzio

The George Washington University offers an IEP Checklist iPhone app. School aged students with disabilities are provided an Individualized Education Program (IEP) designed to support their unique educational needs. The [https://www.heath.gwu.edu/iep-checklist-iphone-app-phone-app IEP Checklist App] helps parents of students with special needs become better-informed advocates by making IEP information easier to access. The newest version of the app has active links to the relevant language in the federal regulations; allows users to record the IEP meeting or record notes; and has the capacity to print out notes and click on a checklist as requested items are discussed.

==Transition Resources==

*[http://www.autismspeaks.org/community/family_services/transition.php Autism Speaks Transition Tool Kit] is a free online tool that serves as a guide to assist families on the journey from adolescence to adulthood and includes sections on self-advocacy, community living, post-secondary educational opportunities, housing, and internet & technology. It also describes specific timelines of the transition processes for each state. Families of adolescents and young adults with autism between the ages of 14 and 22 can request a complementary hard copy [http://events.autismspeaks.org/site/c.jqLTI1OxGlF/b.6546161/k.96F7/Transition_Tool_Kit_Request/apps/ka/ct/contactus.asp?c=jqLTI1OxGlF&b=6546161&en=dkLUK5MHKdLYI8OHKdLRI1MIIfKQKbOWLkJYJ7OOLhKZLlP6F here].

*[http://www.fctd.info/show/order_guides The Family Information Guide to Assistive Technology and Transition Planning] is now available free of charge from the Family Center on Technology and Disability (FCTD). The FCTD is a national organization that produces and distributes information on assistive and instructional technologies. Assistive technology can be anything from a simple device to make holding a pencil easier to a sophisticated computer. This 50-page guide is aimed at providing families with the information they need to effectively prepare for and participate in periods of transition in their children's lives and includes sections on Assistive Technology, Transition Planning, Laws governing accommodations in school settings, and a Glossary of assistive technology terms and resources. Order a free copy [http://www.fctd.info/show/order_guides here].

*[http://www.ncwd-youth.info/publications/making-the-move-to-managing-your-own-personal-assistance-services-pas-a-toolkit-for-youth-with-disabilities-transitioning-to-adulthood/ Making the Move to Managing Your Own Personal Assistance Services (PAS): A Toolkit for Youth Transitioning to Adulthood] - Through its Youth Technical Assistance Center, the National Collaborative on Workforce and Disability-Youth (ODEP) is releasing Making the Move to Managing Your Own Personal Assistance Services (PAS): A Toolkit for Youth Transitioning to Adulthood. Whether moving from school or a home setting to work, college, or living on their own, transition-age youth with significant disabilities and their families or friends will benefit from the information in the toolkit. Accessing and maintaining long-term supports, such as PAS, has been a significant barrier to employment for youth with disabilities. This new toolkit assists youth in strengthening some of the most fundamental skills essential for successfully managing their own PAS: effective communication, time-management, working with others, and establishing professional relationships.

*The [http://www.gottransition.org/ National Health Care Transition Center] works to assure that youth with/without special health care needs receive care in a medical home that provides family-centered/youth activated transition preparation, planned transfers from pediatric to adult health care and respectful partnerships

*[http://iod.unh.edu/Services/professional-development.aspx UNH Institute on Disability] hosted the '''2010 Research to Practice Series: The Pathway from High School to a Career: Promising Strategies, Supports, and Partnerships in Secondary Transition''' in April and May of 2010. The series focused on several unique strategies for developing effective, outcome-based educational experiences that promote the successful transition of students with disabilities and students at risk to their chosen post-secondary experiences. The sessions featured distinct content and objectives, including student-directed models support the development of career goals, sector-based strategies that link high school programs to employers and post-secondary education, ways to use assistive technology to improve educational and employment outcomes, and a school-wide framework that allows educators, parents, and students to utilize the emphasized high school reform. The individual workshops were entitled: '''Assistive Technology and Transition''' and '''High School is Transition: A Framework for Reform that Allows Schools to Educate All Students'''.

*[http://www.fyitransition.net/Minicourses/health/level1/player.html Video on Staying Healthy for Youth in Transition] - This video explains to young people with medical conditions or disabilities the importance of taking care of their health as they transition into adulthood and take responsibility for themselves. Includes information on taking medicines, talking with doctors, carrying an emergency health information card, keeping a health care notebook, paying for health care, going to college and planning for accommodations, eating the right foods, exercising and more.

== Resources Created for Youth by Youth ==

National Kids As Self Advocates (KASA) is pleased to announce three new articles and six new youth written and peer-reviewed tip-sheets. KASA is also pleased to offer a toolkit for students, school administration and paraprofessionals (one-on-one aides in the classroom) on creating a good working relationship with a paraprofessional.

Find KASA Articles at: [http://fvkasa.org/reports/index.php http://fvkasa.org/reports/index.php]

Find youth written and peer-reviewed tip-sheets at: [http://fvkasa.org/resources/index.php http://fvkasa.org/resources/index.php]

Or stay current with what’s new at: [http://fvkasa.org/about/whatsnew.php http://fvkasa.org/about/whatsnew.php]

Order the Paraprofessional Toolkit or watch the Webinar/Teleconference sharing about the toolkit on KASA’s main page at: [http://www.fvkasa.org http://www.fvkasa.org]

NEW Articles:

*[http://fvkasa.org/reports/journey.php Bryan's Odyssey: The Story of a Journey] by Bryan Dooley
*[http://fvkasa.org/reports/interdependence.php Using Interdependence] by Micah Fialka-Feldman
*[http://fvkasa.org/reports/surviving.php My Story About Surviving A Hospital Stay] by Sunjay Smith

NEW Youth Created Tip-sheets:

*[http://fvkasa.org/resources/files/history-awareness.php Awareness Through Networking]
This tip sheet will give you advice on how to network, or connect with new people, so that you can teach them about and make them more comfortable with your disability. The more people know about disabilities as a whole, the more disability awareness is spread.

*[http://fvkasa.org/resources/files/ed-college.php Tips For Surviving Your Freshman Year of College]
The transition from high school to college can be hard but fun. In college you have a lot more responsibility to make sure you get what you need. This tip sheet shares what you need to know to survive (and have fun) in your first year of college.

*[http://fvkasa.org/resources/files/history-pride.php Disability Pride: What is it? How can we express it?]
Disability Pride is an important part of advocacy. Wondering how you can have Disability Pride? Read this to learn about the three parts of disability pride; acceptance, community and history and ways to show your pride.

*[http://fvkasa.org/resources/files/cil.php What is a Center for Independent Living?]
Check out this info sheet to learn more about what CILs do and the many ways they can help you.

*[http://fvkasa.org/resources/files/communityservice.php Getting Involved in Doing Community Service]
Check out this tip-sheet for tips, stories and resources about how you can volunteer in your community.

*[http://fvkasa.org/resources/files/ed-funding%20higher%20ed.09.php Funding Higher Education]
Whether you are in grammar school and the word “college” isn’t even in your vocabulary or in high school preparing for college, it is never too late (or too early) to start looking for funds. “Where do I start?” you may wonder. There are many resources available. Check out this tip sheet for ideas and resources on funding college.

==Internal Links==
*[[Autopsies and Tissue Collection]]
*[[Best Practices]]
*[[Conferences, Workshops, and Meetings for Affected Individuals]]
*[[Connecting Individuals]]
*[[Dealing with Death]]
*[[Internet Services]]
**[[Internet Services: Mailing Lists|Mailing Lists]]
**[[Internet Services: Websites, Chat Rooms, and Newsgroups|Websites, Chat Rooms, and Newsgroups]]
*[[Phone Services: Going Beyond the Phone Tree|Phone Services]]
*[[Protecting Member Privacy]]
*[[Setting Up A National Conference]]
*[[Support for Individuals and Families]]

Youth to Adult Transition Issues

2018-08-01T15:35:41Z

Aguise: /* PEATC (Parent Educational Advocacy Training Center) */

Major life changes such as going to or from a school environment are a crucial issue for members of many advocacy groups. Here are some resources that may help individuals negotiate these changes.

==PEATC (Parent Educational Advocacy Training Center)==

PEATC is Virginia's Parent Training Institute and Parent Information Resource Center. I work specifically with our RSA (Rehabilitation Services Administration) grant on Transitions, building a foundation of resources and trainings around the process of transitioning students with special needs from high school to "life." (including the four major areas of employment, post-secondary ed, training, independent living skills-where appropriate)

PEATC in partnership with Virginia Commonwealth University's Rehabilitation Research and Training Center has developed a FREE three part webinar series devoted to laying the foundations of understanding in the transition process for students with disabilities, their families, educators and adult service providers. While PEATC is Virginia's PTI and PIRC, the transition information is based upon IDEA (Individuals with Disabilities Education Act) and can be transferable/useful across the US. The webinars have rolling registration, will stream on March 3, 10, 17 at 2pm EST. You may access the archived material at [http://www.peatc.org/peatc.cgim?template=on_demand_webinar_training].

Knowing genetic condition and learning disability went hand in hand with our daughter, my hope is for you to pass along this information to families within your organizations and other service providers who may benefit from this free information. Please see attachments for full webinar details and registration.

-Catherine Burzio

PEATC also offers an IEP Checklist iPhone app. School aged students with disabilities are provided an Individualized Education Program (IEP) designed to support their unique educational needs. The [https://www.heath.gwu.edu/iep-checklist-iphone-app-phone-app IEP Checklist App] helps parents of students with special needs become better-informed advocates by making IEP information easier to access. The newest version of the app has active links to the relevant language in the federal regulations; allows users to record the IEP meeting or record notes; and has the capacity to print out notes and click on a checklist as requested items are discussed.

==Transition Resources==

*[http://www.autismspeaks.org/community/family_services/transition.php Autism Speaks Transition Tool Kit] is a free online tool that serves as a guide to assist families on the journey from adolescence to adulthood and includes sections on self-advocacy, community living, post-secondary educational opportunities, housing, and internet & technology. It also describes specific timelines of the transition processes for each state. Families of adolescents and young adults with autism between the ages of 14 and 22 can request a complementary hard copy [http://events.autismspeaks.org/site/c.jqLTI1OxGlF/b.6546161/k.96F7/Transition_Tool_Kit_Request/apps/ka/ct/contactus.asp?c=jqLTI1OxGlF&b=6546161&en=dkLUK5MHKdLYI8OHKdLRI1MIIfKQKbOWLkJYJ7OOLhKZLlP6F here].

*[http://www.fctd.info/show/order_guides The Family Information Guide to Assistive Technology and Transition Planning] is now available free of charge from the Family Center on Technology and Disability (FCTD). The FCTD is a national organization that produces and distributes information on assistive and instructional technologies. Assistive technology can be anything from a simple device to make holding a pencil easier to a sophisticated computer. This 50-page guide is aimed at providing families with the information they need to effectively prepare for and participate in periods of transition in their children's lives and includes sections on Assistive Technology, Transition Planning, Laws governing accommodations in school settings, and a Glossary of assistive technology terms and resources. Order a free copy [http://www.fctd.info/show/order_guides here].

*[http://www.ncwd-youth.info/publications/making-the-move-to-managing-your-own-personal-assistance-services-pas-a-toolkit-for-youth-with-disabilities-transitioning-to-adulthood/ Making the Move to Managing Your Own Personal Assistance Services (PAS): A Toolkit for Youth Transitioning to Adulthood] - Through its Youth Technical Assistance Center, the National Collaborative on Workforce and Disability-Youth (ODEP) is releasing Making the Move to Managing Your Own Personal Assistance Services (PAS): A Toolkit for Youth Transitioning to Adulthood. Whether moving from school or a home setting to work, college, or living on their own, transition-age youth with significant disabilities and their families or friends will benefit from the information in the toolkit. Accessing and maintaining long-term supports, such as PAS, has been a significant barrier to employment for youth with disabilities. This new toolkit assists youth in strengthening some of the most fundamental skills essential for successfully managing their own PAS: effective communication, time-management, working with others, and establishing professional relationships.

*The [http://www.gottransition.org/ National Health Care Transition Center] works to assure that youth with/without special health care needs receive care in a medical home that provides family-centered/youth activated transition preparation, planned transfers from pediatric to adult health care and respectful partnerships

*[http://iod.unh.edu/Services/professional-development.aspx UNH Institute on Disability] hosted the '''2010 Research to Practice Series: The Pathway from High School to a Career: Promising Strategies, Supports, and Partnerships in Secondary Transition''' in April and May of 2010. The series focused on several unique strategies for developing effective, outcome-based educational experiences that promote the successful transition of students with disabilities and students at risk to their chosen post-secondary experiences. The sessions featured distinct content and objectives, including student-directed models support the development of career goals, sector-based strategies that link high school programs to employers and post-secondary education, ways to use assistive technology to improve educational and employment outcomes, and a school-wide framework that allows educators, parents, and students to utilize the emphasized high school reform. The individual workshops were entitled: '''Assistive Technology and Transition''' and '''High School is Transition: A Framework for Reform that Allows Schools to Educate All Students'''.

*[http://www.fyitransition.net/Minicourses/health/level1/player.html Video on Staying Healthy for Youth in Transition] - This video explains to young people with medical conditions or disabilities the importance of taking care of their health as they transition into adulthood and take responsibility for themselves. Includes information on taking medicines, talking with doctors, carrying an emergency health information card, keeping a health care notebook, paying for health care, going to college and planning for accommodations, eating the right foods, exercising and more.

== Resources Created for Youth by Youth ==

National Kids As Self Advocates (KASA) is pleased to announce three new articles and six new youth written and peer-reviewed tip-sheets. KASA is also pleased to offer a toolkit for students, school administration and paraprofessionals (one-on-one aides in the classroom) on creating a good working relationship with a paraprofessional.

Find KASA Articles at: [http://fvkasa.org/reports/index.php http://fvkasa.org/reports/index.php]

Find youth written and peer-reviewed tip-sheets at: [http://fvkasa.org/resources/index.php http://fvkasa.org/resources/index.php]

Or stay current with what’s new at: [http://fvkasa.org/about/whatsnew.php http://fvkasa.org/about/whatsnew.php]

Order the Paraprofessional Toolkit or watch the Webinar/Teleconference sharing about the toolkit on KASA’s main page at: [http://www.fvkasa.org http://www.fvkasa.org]

NEW Articles:

*[http://fvkasa.org/reports/journey.php Bryan's Odyssey: The Story of a Journey] by Bryan Dooley
*[http://fvkasa.org/reports/interdependence.php Using Interdependence] by Micah Fialka-Feldman
*[http://fvkasa.org/reports/surviving.php My Story About Surviving A Hospital Stay] by Sunjay Smith

NEW Youth Created Tip-sheets:

*[http://fvkasa.org/resources/files/history-awareness.php Awareness Through Networking]
This tip sheet will give you advice on how to network, or connect with new people, so that you can teach them about and make them more comfortable with your disability. The more people know about disabilities as a whole, the more disability awareness is spread.

*[http://fvkasa.org/resources/files/ed-college.php Tips For Surviving Your Freshman Year of College]
The transition from high school to college can be hard but fun. In college you have a lot more responsibility to make sure you get what you need. This tip sheet shares what you need to know to survive (and have fun) in your first year of college.

*[http://fvkasa.org/resources/files/history-pride.php Disability Pride: What is it? How can we express it?]
Disability Pride is an important part of advocacy. Wondering how you can have Disability Pride? Read this to learn about the three parts of disability pride; acceptance, community and history and ways to show your pride.

*[http://fvkasa.org/resources/files/cil.php What is a Center for Independent Living?]
Check out this info sheet to learn more about what CILs do and the many ways they can help you.

*[http://fvkasa.org/resources/files/communityservice.php Getting Involved in Doing Community Service]
Check out this tip-sheet for tips, stories and resources about how you can volunteer in your community.

*[http://fvkasa.org/resources/files/ed-funding%20higher%20ed.09.php Funding Higher Education]
Whether you are in grammar school and the word “college” isn’t even in your vocabulary or in high school preparing for college, it is never too late (or too early) to start looking for funds. “Where do I start?” you may wonder. There are many resources available. Check out this tip sheet for ideas and resources on funding college.

==Internal Links==
*[[Autopsies and Tissue Collection]]
*[[Best Practices]]
*[[Conferences, Workshops, and Meetings for Affected Individuals]]
*[[Connecting Individuals]]
*[[Dealing with Death]]
*[[Internet Services]]
**[[Internet Services: Mailing Lists|Mailing Lists]]
**[[Internet Services: Websites, Chat Rooms, and Newsgroups|Websites, Chat Rooms, and Newsgroups]]
*[[Phone Services: Going Beyond the Phone Tree|Phone Services]]
*[[Protecting Member Privacy]]
*[[Setting Up A National Conference]]
*[[Support for Individuals and Families]]

Youth to Adult Transition Issues

2018-08-01T15:34:18Z

Aguise: /* PEATC (Parent Educational Advocacy Training Center) */

Major life changes such as going to or from a school environment are a crucial issue for members of many advocacy groups. Here are some resources that may help individuals negotiate these changes.

==PEATC (Parent Educational Advocacy Training Center)==

PEATC is Virginia's Parent Training Institute and Parent Information Resource Center. I work specifically with our RSA (Rehabilitation Services Administration) grant on Transitions, building a foundation of resources and trainings around the process of transitioning students with special needs from high school to "life." (including the four major areas of employment, post-secondary ed, training, independent living skills-where appropriate)

PEATC in partnership with Virginia Commonwealth University's Rehabilitation Research and Training Center has developed a FREE three part webinar series devoted to laying the foundations of understanding in the transition process for students with disabilities, their families, educators and adult service providers. While PEATC is Virginia's PTI and PIRC, the transition information is based upon IDEA (Individuals with Disabilities Education Act) and can be transferable/useful across the US. The webinars have rolling registration, will stream on March 3, 10, 17 at 2pm EST. You may access the archived material at [http://www.peatc.org/peatc.cgim?template=on_demand_webinar_training].

Knowing genetic condition and learning disability went hand in hand with our daughter, my hope is for you to pass along this information to families within your organizations and other service providers who may benefit from this free information. Please see attachments for full webinar details and registration.

-Catherine Burzio

PEATC also offers an IEP Checklist iPhone app. School aged students with disabilities are provided an Individualized Education Program (IEP) designed to support their unique educational needs. The [http://www.peatc.org/peatc.cgim?template=IEPChecklistiPhone IEP Checklist App] helps parents of students with special needs become better-informed advocates by making IEP information easier to access. The newest version of the app has active links to the relevant language in the federal regulations; allows users to record the IEP meeting or record notes; and has the capacity to print out notes and click on a checklist as requested items are discussed.

==Transition Resources==

*[http://www.autismspeaks.org/community/family_services/transition.php Autism Speaks Transition Tool Kit] is a free online tool that serves as a guide to assist families on the journey from adolescence to adulthood and includes sections on self-advocacy, community living, post-secondary educational opportunities, housing, and internet & technology. It also describes specific timelines of the transition processes for each state. Families of adolescents and young adults with autism between the ages of 14 and 22 can request a complementary hard copy [http://events.autismspeaks.org/site/c.jqLTI1OxGlF/b.6546161/k.96F7/Transition_Tool_Kit_Request/apps/ka/ct/contactus.asp?c=jqLTI1OxGlF&b=6546161&en=dkLUK5MHKdLYI8OHKdLRI1MIIfKQKbOWLkJYJ7OOLhKZLlP6F here].

*[http://www.fctd.info/show/order_guides The Family Information Guide to Assistive Technology and Transition Planning] is now available free of charge from the Family Center on Technology and Disability (FCTD). The FCTD is a national organization that produces and distributes information on assistive and instructional technologies. Assistive technology can be anything from a simple device to make holding a pencil easier to a sophisticated computer. This 50-page guide is aimed at providing families with the information they need to effectively prepare for and participate in periods of transition in their children's lives and includes sections on Assistive Technology, Transition Planning, Laws governing accommodations in school settings, and a Glossary of assistive technology terms and resources. Order a free copy [http://www.fctd.info/show/order_guides here].

*[http://www.ncwd-youth.info/publications/making-the-move-to-managing-your-own-personal-assistance-services-pas-a-toolkit-for-youth-with-disabilities-transitioning-to-adulthood/ Making the Move to Managing Your Own Personal Assistance Services (PAS): A Toolkit for Youth Transitioning to Adulthood] - Through its Youth Technical Assistance Center, the National Collaborative on Workforce and Disability-Youth (ODEP) is releasing Making the Move to Managing Your Own Personal Assistance Services (PAS): A Toolkit for Youth Transitioning to Adulthood. Whether moving from school or a home setting to work, college, or living on their own, transition-age youth with significant disabilities and their families or friends will benefit from the information in the toolkit. Accessing and maintaining long-term supports, such as PAS, has been a significant barrier to employment for youth with disabilities. This new toolkit assists youth in strengthening some of the most fundamental skills essential for successfully managing their own PAS: effective communication, time-management, working with others, and establishing professional relationships.

*The [http://www.gottransition.org/ National Health Care Transition Center] works to assure that youth with/without special health care needs receive care in a medical home that provides family-centered/youth activated transition preparation, planned transfers from pediatric to adult health care and respectful partnerships

*[http://iod.unh.edu/Services/professional-development.aspx UNH Institute on Disability] hosted the '''2010 Research to Practice Series: The Pathway from High School to a Career: Promising Strategies, Supports, and Partnerships in Secondary Transition''' in April and May of 2010. The series focused on several unique strategies for developing effective, outcome-based educational experiences that promote the successful transition of students with disabilities and students at risk to their chosen post-secondary experiences. The sessions featured distinct content and objectives, including student-directed models support the development of career goals, sector-based strategies that link high school programs to employers and post-secondary education, ways to use assistive technology to improve educational and employment outcomes, and a school-wide framework that allows educators, parents, and students to utilize the emphasized high school reform. The individual workshops were entitled: '''Assistive Technology and Transition''' and '''High School is Transition: A Framework for Reform that Allows Schools to Educate All Students'''.

*[http://www.fyitransition.net/Minicourses/health/level1/player.html Video on Staying Healthy for Youth in Transition] - This video explains to young people with medical conditions or disabilities the importance of taking care of their health as they transition into adulthood and take responsibility for themselves. Includes information on taking medicines, talking with doctors, carrying an emergency health information card, keeping a health care notebook, paying for health care, going to college and planning for accommodations, eating the right foods, exercising and more.

== Resources Created for Youth by Youth ==

National Kids As Self Advocates (KASA) is pleased to announce three new articles and six new youth written and peer-reviewed tip-sheets. KASA is also pleased to offer a toolkit for students, school administration and paraprofessionals (one-on-one aides in the classroom) on creating a good working relationship with a paraprofessional.

Find KASA Articles at: [http://fvkasa.org/reports/index.php http://fvkasa.org/reports/index.php]

Find youth written and peer-reviewed tip-sheets at: [http://fvkasa.org/resources/index.php http://fvkasa.org/resources/index.php]

Or stay current with what’s new at: [http://fvkasa.org/about/whatsnew.php http://fvkasa.org/about/whatsnew.php]

Order the Paraprofessional Toolkit or watch the Webinar/Teleconference sharing about the toolkit on KASA’s main page at: [http://www.fvkasa.org http://www.fvkasa.org]

NEW Articles:

*[http://fvkasa.org/reports/journey.php Bryan's Odyssey: The Story of a Journey] by Bryan Dooley
*[http://fvkasa.org/reports/interdependence.php Using Interdependence] by Micah Fialka-Feldman
*[http://fvkasa.org/reports/surviving.php My Story About Surviving A Hospital Stay] by Sunjay Smith

NEW Youth Created Tip-sheets:

*[http://fvkasa.org/resources/files/history-awareness.php Awareness Through Networking]
This tip sheet will give you advice on how to network, or connect with new people, so that you can teach them about and make them more comfortable with your disability. The more people know about disabilities as a whole, the more disability awareness is spread.

*[http://fvkasa.org/resources/files/ed-college.php Tips For Surviving Your Freshman Year of College]
The transition from high school to college can be hard but fun. In college you have a lot more responsibility to make sure you get what you need. This tip sheet shares what you need to know to survive (and have fun) in your first year of college.

*[http://fvkasa.org/resources/files/history-pride.php Disability Pride: What is it? How can we express it?]
Disability Pride is an important part of advocacy. Wondering how you can have Disability Pride? Read this to learn about the three parts of disability pride; acceptance, community and history and ways to show your pride.

*[http://fvkasa.org/resources/files/cil.php What is a Center for Independent Living?]
Check out this info sheet to learn more about what CILs do and the many ways they can help you.

*[http://fvkasa.org/resources/files/communityservice.php Getting Involved in Doing Community Service]
Check out this tip-sheet for tips, stories and resources about how you can volunteer in your community.

*[http://fvkasa.org/resources/files/ed-funding%20higher%20ed.09.php Funding Higher Education]
Whether you are in grammar school and the word “college” isn’t even in your vocabulary or in high school preparing for college, it is never too late (or too early) to start looking for funds. “Where do I start?” you may wonder. There are many resources available. Check out this tip sheet for ideas and resources on funding college.

==Internal Links==
*[[Autopsies and Tissue Collection]]
*[[Best Practices]]
*[[Conferences, Workshops, and Meetings for Affected Individuals]]
*[[Connecting Individuals]]
*[[Dealing with Death]]
*[[Internet Services]]
**[[Internet Services: Mailing Lists|Mailing Lists]]
**[[Internet Services: Websites, Chat Rooms, and Newsgroups|Websites, Chat Rooms, and Newsgroups]]
*[[Phone Services: Going Beyond the Phone Tree|Phone Services]]
*[[Protecting Member Privacy]]
*[[Setting Up A National Conference]]
*[[Support for Individuals and Families]]

Support for Individuals and Families

2018-08-01T15:23:38Z

Aguise: /* Military Families */

==Support for Individuals and Families==
Support for individuals and families takes many forms. The forerunners of today's advocacy organizations got their beginnings as support groups of various kinds, whether assisting new immigrants in the logistics of settling in their adoptive country or helping individuals cope with disease. Today's advocacy organization can be a sophisticated organization, involved in everything from developing research protocols to midwifing legislation, but it takes its mandate from the same place as the most humble support group: ensuring that individuals and families with a particular trait do not feel that they are alone.

Support can involve education and advocacy, but in this section, we'll focus on direct support to individuals and families. At its most basic, a support group provides a central point of contact for individuals and families united by a common interest. It provides concrete proof that an individual is not alone. It can also provide a clearinghouse for information or updates relevant to an interest.

Your organization's support activities can include:

*Placing information packets with providers likely to be a first point of contact for affected individuals and families, and otherwise advertising your existence
*Connecting individuals or families with "mentor" members who can help them acclimate to new information or new tasks
*Holding regular meetings, in person or online, where individuals and family members can share information
*Maintaining a contact list of members
*Publishing a newsletter
*Maintaining a telephone hotline
*Maintaining an electronic mailing list
*Holding periodic events where individuals and families can relax and socialize, like summer picnics or winter holiday parties

Support, of course, is not just making contact and getting basic information out. It's an ongoing process, whose scope and specifics change with the changing needs of membership. Where a newly diagnosed person may be hungry for basic information, a family that has integrated the care and support required for an affected family member may wish to just dip into a community from time to time, to socialize with others that understand but not necessarily focus directly on the condition.

In fact, support functions are essentially "networking" activities. In networking, you keep track of who you know and link yourself or others with people who can help you (or whom you can help in return). People sometimes think of networking as something they have to do to get a job or something they do on the job in order to "get visibility" or preserve options at the workplace. These are the same things you'll need to do for your organization—and help your members do for each other.

As mentioned above, there are several ways to ensure community members have means to obtain answers to their inquires as well as to share information. While platforms such as Listservs may be useful, another possibility for advocacy organizations is to set up a Community Forum.

Connie Lee

Angioma Alliance

“We have always used a bulletin board format we call a Community Forum, but our forum has an active moderator model that could be useful. We have four (and sometimes five) active moderators. They guarantee a question will get four or more responses because they will each post an answer if no other community member does. They are also charged with helping members find the most relevant historical discussions and with tagging other community members who could contribute to a thread. I think a forum member (new or old) asking a question is about so much more than simply seeking information. If they are like me, they are using questions to form or reinforce connections to the community. The one downside to our active moderator model, as compared to the use of a listserv, is the volume of email. On the bulletin board, people can skip a thread if they aren't interested - no delete key needed.”

==A Snapshot of Support Offerings: CFC Family Network==
:Brenda Conger, Director
:CFC Family Network, Inc.

"It's hard to express the feeling I had the first time I talked to another parent with a CFC syndrome child. It was like coming home.

Our first CFC Family Network, Inc., newsletter was distributed in 1999.

We have come a long way since that time and our membership has grown by leaps and bounds. We recently mailed the 2000 Fall Edition of our newsletter, which was sent to over 75 families from around the world.

The CFC Syndrome Support Group, Inc., was founded in 1991 by Nancy and John Carlson and is now run by Brenda and Clifford Conger. We offer support to families and professionals whose lives have been touched by CFC syndrome.

We also offer a "Parent Packet" that contains many pages of information relative to the various aspects of CFC. Other parents have written letters along with our valuable organization newsletters. Helpful agencies are also included in this mailing.

We are a networking group. If members need to talk to someone, they can give me a call (evenings or weekends), or feel free to call anyone on our contact list. We would be happy to talk with you.

We also operate an electronic mailing list and we encourage members to subscribe. There is no fee for this service, and you get to exchange information with others in the group whose lives are affected by CFC syndrome.

During the first three years of our child's life, I had always dreamed of finding other families who had a child like ours. In addition to uncovering the diagnosis, I was also desperate to talk to another family about the many medical and developmental issues. Today I can truly say I have made some wonderful new friends from all over the world."

== Parent Portfolio Notebook ==

Increasingly, parents and other family members are being asked to shape are create better systems of services for their special needs children. The ''Parent Portfolio Notebook'' is a dynamic, record-keeping system designed by parents and their professional partners to assist parents in describing their qualifications to (1) serve on Governing Boards, Advisory Boards, Task Forces, workgroups, and other policymaking bodies or (2) apply for paid positions in the disability service system, school districts, and other related fields by:

*recording and organizing their talents and skills, educational and training experiences
*providing a format to document their life experiences

As a parent or family member, qualifications don't come from credentials and degrees. They come from knowledge of your child, trying to get services for your child, attending individualized planning meetings, facilitating your child's involvement in the community, advocating for your child, teaching others about your child's disability, attending workshops, and your quest for knowledge. You are an expert. The Parent Portfolio Notebook will help you describe your expertise to others.

On April 21, 2010, the Family Resource Centers Network of California (FRCNC) and ''Parent Portfolio Notebook'' authors Jean Hansen and Christy Cole presented the interactive webinar: '''PARENT PORTFOLIO NOTEBOOK: Turning Life Experiences into Credentials''' to provide you with an introduction to the Parent Portfolio Notebook so that you can use it yourself or share the information with the parents with whom you work.

More information can be found on the [http://www.frcnca.org/pubs.html FRCNC website].

== Summertime with the Family ==

Summer is a time for camps and vacations, so make the most of it!

Families of individuals with genetic conditions and special needs often need to plan ahead to make sure their vacations are relaxing for everyone. Here are a few great resources you may want to check out:

*[http://www.veryspecialcamps.com/ Camps for Children with Special Needs]
*[http://www.grandparents.com/gp/content/travel/travel-tips/article/grandchildren-with-special-needs.html Traveling with Special Needs Children - Tips and Advice]

Add your own tips or resources to help families have a fun and relaxing summer.

==Military Families==
Military families encounter unique challenges because of the transient nature of their career. They often move frequently and need more flexible networks of care. This is especially important when the family has a child with special needs. [https://www.parentcenterhub.org/military/ The Center for Parent Information & Resources] has collected several resources that accommodate the needs of military families with special needs children.

==Guardianship Options==
Some people might be interested in alternatives to guardianship. Different organizations provide a one page document with these options, so here is what we found so far:
*[http://www.nmddpc.com/alternatives_to_guardianship New Mexico Developmental Disabilities Planning Council]

*[http://trusts-estates.lawyers.com/guardianship-conservatorship/Alternatives-to-Guardianship.html Lawyers.com]

==Internal Links==
*[[Autopsies and Tissue Collection]]
*[[Best Practices]]
*[[Conferences, Workshops, and Meetings for Affected Individuals]]
*[[Connecting Individuals]]
*[[Dealing with Death]]
*[[Internet Services]]
**[[Internet Services: Mailing Lists|Mailing Lists]]
**[[Internet Services: Websites, Chat Rooms, and Newsgroups|Websites, Chat Rooms, and Newsgroups]]
*[[Phone Services: Going Beyond the Phone Tree|Phone Services]]
*[[Protecting Member Privacy]]
*[[Setting Up A National Conference]]
*[[Youth to Adult Transition Issues]]

Support for Individuals and Families

2018-08-01T15:20:20Z

Aguise: /* Summertime with the Family */

==Support for Individuals and Families==
Support for individuals and families takes many forms. The forerunners of today's advocacy organizations got their beginnings as support groups of various kinds, whether assisting new immigrants in the logistics of settling in their adoptive country or helping individuals cope with disease. Today's advocacy organization can be a sophisticated organization, involved in everything from developing research protocols to midwifing legislation, but it takes its mandate from the same place as the most humble support group: ensuring that individuals and families with a particular trait do not feel that they are alone.

Support can involve education and advocacy, but in this section, we'll focus on direct support to individuals and families. At its most basic, a support group provides a central point of contact for individuals and families united by a common interest. It provides concrete proof that an individual is not alone. It can also provide a clearinghouse for information or updates relevant to an interest.

Your organization's support activities can include:

*Placing information packets with providers likely to be a first point of contact for affected individuals and families, and otherwise advertising your existence
*Connecting individuals or families with "mentor" members who can help them acclimate to new information or new tasks
*Holding regular meetings, in person or online, where individuals and family members can share information
*Maintaining a contact list of members
*Publishing a newsletter
*Maintaining a telephone hotline
*Maintaining an electronic mailing list
*Holding periodic events where individuals and families can relax and socialize, like summer picnics or winter holiday parties

Support, of course, is not just making contact and getting basic information out. It's an ongoing process, whose scope and specifics change with the changing needs of membership. Where a newly diagnosed person may be hungry for basic information, a family that has integrated the care and support required for an affected family member may wish to just dip into a community from time to time, to socialize with others that understand but not necessarily focus directly on the condition.

In fact, support functions are essentially "networking" activities. In networking, you keep track of who you know and link yourself or others with people who can help you (or whom you can help in return). People sometimes think of networking as something they have to do to get a job or something they do on the job in order to "get visibility" or preserve options at the workplace. These are the same things you'll need to do for your organization—and help your members do for each other.

As mentioned above, there are several ways to ensure community members have means to obtain answers to their inquires as well as to share information. While platforms such as Listservs may be useful, another possibility for advocacy organizations is to set up a Community Forum.

Connie Lee

Angioma Alliance

“We have always used a bulletin board format we call a Community Forum, but our forum has an active moderator model that could be useful. We have four (and sometimes five) active moderators. They guarantee a question will get four or more responses because they will each post an answer if no other community member does. They are also charged with helping members find the most relevant historical discussions and with tagging other community members who could contribute to a thread. I think a forum member (new or old) asking a question is about so much more than simply seeking information. If they are like me, they are using questions to form or reinforce connections to the community. The one downside to our active moderator model, as compared to the use of a listserv, is the volume of email. On the bulletin board, people can skip a thread if they aren't interested - no delete key needed.”

==A Snapshot of Support Offerings: CFC Family Network==
:Brenda Conger, Director
:CFC Family Network, Inc.

"It's hard to express the feeling I had the first time I talked to another parent with a CFC syndrome child. It was like coming home.

Our first CFC Family Network, Inc., newsletter was distributed in 1999.

We have come a long way since that time and our membership has grown by leaps and bounds. We recently mailed the 2000 Fall Edition of our newsletter, which was sent to over 75 families from around the world.

The CFC Syndrome Support Group, Inc., was founded in 1991 by Nancy and John Carlson and is now run by Brenda and Clifford Conger. We offer support to families and professionals whose lives have been touched by CFC syndrome.

We also offer a "Parent Packet" that contains many pages of information relative to the various aspects of CFC. Other parents have written letters along with our valuable organization newsletters. Helpful agencies are also included in this mailing.

We are a networking group. If members need to talk to someone, they can give me a call (evenings or weekends), or feel free to call anyone on our contact list. We would be happy to talk with you.

We also operate an electronic mailing list and we encourage members to subscribe. There is no fee for this service, and you get to exchange information with others in the group whose lives are affected by CFC syndrome.

During the first three years of our child's life, I had always dreamed of finding other families who had a child like ours. In addition to uncovering the diagnosis, I was also desperate to talk to another family about the many medical and developmental issues. Today I can truly say I have made some wonderful new friends from all over the world."

== Parent Portfolio Notebook ==

Increasingly, parents and other family members are being asked to shape are create better systems of services for their special needs children. The ''Parent Portfolio Notebook'' is a dynamic, record-keeping system designed by parents and their professional partners to assist parents in describing their qualifications to (1) serve on Governing Boards, Advisory Boards, Task Forces, workgroups, and other policymaking bodies or (2) apply for paid positions in the disability service system, school districts, and other related fields by:

*recording and organizing their talents and skills, educational and training experiences
*providing a format to document their life experiences

As a parent or family member, qualifications don't come from credentials and degrees. They come from knowledge of your child, trying to get services for your child, attending individualized planning meetings, facilitating your child's involvement in the community, advocating for your child, teaching others about your child's disability, attending workshops, and your quest for knowledge. You are an expert. The Parent Portfolio Notebook will help you describe your expertise to others.

On April 21, 2010, the Family Resource Centers Network of California (FRCNC) and ''Parent Portfolio Notebook'' authors Jean Hansen and Christy Cole presented the interactive webinar: '''PARENT PORTFOLIO NOTEBOOK: Turning Life Experiences into Credentials''' to provide you with an introduction to the Parent Portfolio Notebook so that you can use it yourself or share the information with the parents with whom you work.

More information can be found on the [http://www.frcnca.org/pubs.html FRCNC website].

== Summertime with the Family ==

Summer is a time for camps and vacations, so make the most of it!

Families of individuals with genetic conditions and special needs often need to plan ahead to make sure their vacations are relaxing for everyone. Here are a few great resources you may want to check out:

*[http://www.veryspecialcamps.com/ Camps for Children with Special Needs]
*[http://www.grandparents.com/gp/content/travel/travel-tips/article/grandchildren-with-special-needs.html Traveling with Special Needs Children - Tips and Advice]

Add your own tips or resources to help families have a fun and relaxing summer.

==Military Families==
Military families encounter unique challenges because of the transient nature of their career. They often move frequently and need more flexible networks of care. This is especially important when the family has a child with special needs. [http://nichcy.org/ The National Dissemination Center for Children with Disabilities] has collected several resources that accommodate the needs of military families with special needs children. You can view the resources [http://nichcy.org/families-community/military here].

==Guardianship Options==
Some people might be interested in alternatives to guardianship. Different organizations provide a one page document with these options, so here is what we found so far:
*[http://www.nmddpc.com/alternatives_to_guardianship New Mexico Developmental Disabilities Planning Council]

*[http://trusts-estates.lawyers.com/guardianship-conservatorship/Alternatives-to-Guardianship.html Lawyers.com]

==Internal Links==
*[[Autopsies and Tissue Collection]]
*[[Best Practices]]
*[[Conferences, Workshops, and Meetings for Affected Individuals]]
*[[Connecting Individuals]]
*[[Dealing with Death]]
*[[Internet Services]]
**[[Internet Services: Mailing Lists|Mailing Lists]]
**[[Internet Services: Websites, Chat Rooms, and Newsgroups|Websites, Chat Rooms, and Newsgroups]]
*[[Phone Services: Going Beyond the Phone Tree|Phone Services]]
*[[Protecting Member Privacy]]
*[[Setting Up A National Conference]]
*[[Youth to Adult Transition Issues]]

Social Networking

2018-08-01T15:15:10Z

Aguise: /* Recommended Links */

Social networking sites have seen a dramatic increase in popularity, leaving many advocacy organizations wondering the best way to engage with and integrate this technology into their organizations. Information on [http://www.facebook.com Facebook] is shared below, but feel free to help us expand and include information on other social networking sites, such as [http://www.myspace.com MySpace] and [http://www.twitter.com Twitter].

Social media can be a very useful tool for interacting with your community. Many organizations use social media (e.g. Twitter, Facebook and others) as a broadcast communication tool, updating their community and thepublic about progress or new developments with their registry or biobank. This is just the beginning. Social media can also be used strategically to listen to and engage with your community. [http://www.slideshare.net/Radian6/30-ideas-for-your-2012-social-media-plan Radian6] has created a wonderful resource, 30 ideas for your social media plan in 2012 that provides insight on how to use social media more effectively. Once your social media plan is in place, be sure to [http://blog.kissmetrics.com/science-of-social-timing-1 time your posts] for when your audience is most likely to be listening.

== Facebook ==
=== Where do I start? ===

Facebook has many different ways to be involved as an organization, such as Causes and Groups. It might be easiest to just start with your own personal profile so you understand what your constituents are seeing from the user side. "Friend them,"
watch their behavior, what attracts, what doesn't, join Cause Pages and Fan Pages of other non-profits and get their updates and announcements on Facebook and you'll pick it up. Or find a constituent/volunteer who's already "into it" and ask them to be a "virtual" volunteer leader of your Facebook presence to grow it organically. To learn more about Facebook pages, you can read [[Media:Facebook_Pages_Insider's_Guide.pdf|"The Insider's Guide."]]

The following is one organization's take on how to use Facebook:

Eleni Tsigas

Preeclampsia Foundation

"When you do a Facebook Ad, including Boosted Posts, you can run it to current fans or with an exception criteria that does not include your current Fans. That being said, I would hesitate to boost ANY post unless there was a specific drive/aim in us doing so. Boosting it just to get visibility with no call-to-action is not an effective use of money. Driving general Likes on the other hand, does serve us well and is worth the investment, though if you ever got to the point where you had exhausted potential clients, I would recommend that you take a break for some time.

In addition, Facebook (and social media in general) raises AWARENESS, not funds. Email marketing is much better suited for that purpose, and better yet, peer-to-peer requests. Facebook does, however, remind people of important things like "Oh, I should go register for a walk and start fundraising." People make the mistake of assuming it is a panacea instead of one more tool in the communication arsenal.”

*'''Causes''' 

Any Facebook users will be able to see all your NonProfit's Cause Pages in one place that looks like [https://apps.facebook.com/causes/ this]. But the NPO as an entity won't be able to manage relationships with these User-created Cause Pages without this approval from the Cause Application Company, Project Agape.

As an approved Partner, you'll be granted access to a different background ADMIN page that through a portal page that only organizations are be able to access. From there, you'll be able to "designate" which of all the Cause Pages out there is the "official" Cause Page of the organization from that ADMIN area. You can still need to create your own Cause page from the User side as a leader of the organization and then designate THAT one as the "official" Cause page. Or choose None as "official" and just receive donations as the chosen beneficiary of the multiple pages created to support your cause.

You'll also have options from your ADMIN area to "Manage Causes" and can "disassociate" any that you don't want to be associated with your Cause. You can also "Manage Donations," where you can see all your donors, download reports to add them to your donor database, have options for "thank them" using Facebook, etc. One point to be aware of: The official Causes Partner reports often list as Anonymous some contributions for which an individual donor is identified on the specific Cause page where the donation was made.(This depends on which box the donor checks at the time of the donation.) Unless you keep track of each associated Cause page, you will miss the opportunity to thank some donors who are identified on the individual Cause page but not on the Causes Partner reports. You can also administer Cause Petitions within your ADMIN area where you appeal for people to "sign" a collective petition advocating for some sort of change.

Then encourage any of your constituents who want to create their own Cause Page to do so and ALL of them can be set to "benefit" your 501(c)(3). Anyone can create a Cause page if they add the Cause application to their Facebook Profile. They can join lots of Causes and create multiple Cause pages for causes they care about. They "choose" who their Cause page will benefit from any nonprofit organization that is listed in [http://www.guidestar.org Guidestar database].

Then keep creating ways in your campaigns/appeals/advocacy alerts to give your constituents a way to viral your message to everyone on their Cause page with "canned" text/graphics/links back to page on your website and you've got a movement.
People always respond best to appeals made by people they know. Empower your constituents to be ambassadors of your messages. They get the experience of helping the cause they care about and have passion to share with others they know. You get people to reach more people with your appeals for the cause than you would ever reach in a top-down message delivery strategy.

More good information about Causes can be accessed from Facebook's [https://apps.facebook.com/causes/ Causes' FAQs] and [http://apps.facebook.com/causes/about?m=736620da here].

*'''Groups''' 

Facebook Group pages are very easy to create also, but are more like an open or closed online group meeting space. Doesn't
have near the tools for NPO communications and outreach and fundraising, but it has it functions. We have a group page for volunteers [http://www.facebook.com/groups.php?ref=sb#/group.php?gid=11572144041 here], but we haven't done a lot with it except let it grow and share "news" posts and links. It's still grown to over 600 in last year.

An idea for patient privacy is to open your group page only to those who have signed up as members of your Association.
Those who are NOT members, can be messaged as to their affiliation (I have a sister with this disease, my child has this disease…)
The message is sent by going to the inquirer's own FB page and clicking on SEND A MESSAGE.
It not only helps with patient privacy, but provides new members.

The only drawback to this system is if the person does not have the message ability
on their FB page when one goes to message them to ask their affiliation….

Also, there are sometimes patients who, for various reasons, start another FB page
on the same disease… these are usually not a big draw from the "official" disease page and
serve a purpose for their group. One can ask them to be a Friend, posting when
appropriate on these other pages, but not so often as to appear to be FB-stalking them.

* 10 Tips for Non-Profits on Facebook -
http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook

*'''Discussion following #deleteFacebook in 2018''' 

---"The HLRCC Family Alliance has wrestled with the use of the Facebook Group and other forums for some years.
We made the Facebook group secret which means that not only are posts private, but the member list is also. As it is not found by search people have to find it via the website and send an email to contact and receive an invitation to join. Or people can add family and Facebook friends.
We were finding nevertheless that there were limitations on long-term functionality with older posts being difficult to find if longer than a year or two old.
About three years ago an organisation called Smart Patients was started from a previous list forum called ACOR. It supports all medical conditions with a set of communities and we created one for HLRCC.The admin and IT support are second to none. We have encouraged the Facebook group to become members and about two thirds have 200 out of 300
The Facebook group continues but we have people in Smart Patients with no Facebook account so we have some cross communication issues."

---"I’m glad to see you mentioning Smart Patients. I recently joined Smart Patients because of a health condition with which I was diagnosed. From the patient perspective, it seems superbly run, though I know absolutely nothing about what happens behind the curtain. I recently heard something that stuck with me. It was on a NPR program about Facebook moving to a pay for service model. “If you’re not PAYING for the product, you ARE the product.” One concern I have about Smart Patients is that, like Facebook, it does share anonymized data with third parties without the consent of members: https://www.smartpatients.com/faq#what-is-smart-patients."

---"When I was in charge of social media for The XLH Network, Inc., I resisted creating a Facebook group, for all the reasons that are now being addressed -- concerns about privacy, even in a closed group; the lack of email addresses for our database (so we didn't "own" the membership -- Facebook did); and dividing up our community into a variety of platforms. I don't know for sure that it was the right decision, but at least it meant that the Network has always had an alternative to Facebook in place.

The Network started as a listserv, and then the membership transferred to a forum. Unfortunately, forums aren't as easy/convenient to use as Facebook (although they offer a lot of benefits, including being able to organize responses by topic, which makes them highly searchable, and you can collect a lot of advice on repeat topics over the years), so it's difficult to get engagement there. But at least the nonprofit retains ownership of the membership, which it doesn't have with any interactions on Facebook, .

Since we had a forum already, we didn't need a platform like SmartPatients or PatientsLikeMe.com, and creating accounts with them would have split our community even further (some at Facebook, some at the Network's forum and some at these other platforms). Personally, both of those options worry me in much the same way that Facebook does, since they're FOR-PROFIT entities, based on their dot-com URLs.

To some extent, in this day and age, it's necessary to split the community and offer a variety of platforms for discussion -- some people just won't use a forum and some just won't use Facebook, and so on. (We considered creating a Google group, but just didn't have the experienced personnel to monitor it, and all platforms need monitoring.) So the Network maintains a Facebook page, but encourages taking private discussion over at the forum.

Just to throw out another concern with Facebook -- a few months ago, some consultants started stalking our patient community on Facebook. I don't even know how they did it, because I wasn't able to duplicate their search results, but they were able to find out who on Facebook mentioned XLH in their PRIVATE timelines/profiles. The consultants then sent private messages to those people to ask them to participate in some research. At first, we thought they were scraping info from people who posted to the Network's page, which was bad enough, but it appeared to go beyond that, to people who had never posted to the page, but mentioned XLH in their private timelines. I still don't know how they did that, but it's worrisome."

---"Our Facebook group pre-dates the organization that I run. I am heavily invested in it, but it’s not under our organization. I think for now it will continue to be most appropriate for our condition. I see a lot of benefits to the FB platform for our patient families - the cross talk with groups for comorbidities and the ability to message and friend other families. I’ve learned a lot about other patients from what they post outside of the group, just seeing their everyday lives, that helps me as a caregiver and as an advocate. That is one thing that you would never get from a stand alone forum. That said, it’s pretty clear that Facebook doesn’t really care about group users and there are plenty of frustrating things about the features for groups.

I’ve set up Vanilla Forums for another organization:
https://vanillaforums.com/en/software/
We set up the self-hosted open source product, so it is free but has to be maintained. I think for most groups I’d recommend using their paid, hosted product though. It’s not cheap. I wonder if they may have some flexible pricing for non-profits though.

The Chordoma Foundation launched a community recently on this platform
https://personifycorp.com/small-world-community/
I’ve been curious about that but don’t know anymore than what they have publicized about it.

I signed up for SmartPatients to check it out and registered for a group (or tag in SP) for a brain condition relevant to our syndrome. I found it mildly glitchy (not terrible, but not thrilling either) and the group had seen very light use. I found that via tags in posts, I could access other conditions that I’m not sure I was supposed to be able to access. I think it could have potential, but it seemed like it may have lost momentum to me.

I think this is an interesting conversation, I’d love to see better platforms for our groups flower. But for us there’s not a strong need yet I think."

---"We have been struggling with this as well for several years now. The largest and most active private FB group for our patient community was started by a group of patients and is not administrated by us or any organization. From the very beginning I have been struggling to figure out community forum options because I never felt comfortable with a private FB group for all the reasons already stated here. So we did start a Smart patient community, but it hasn’t gotten the traction we had hoped.

We have discussed this often with the Genetic Alliance to see if there was a solution as part of the PEER platform. Since it is non profit and already has some strong privacy built into it, perhaps if enough of the groups on the PEER platform are interested it is something we could pursue.

Our other thought is to see if building out a private community forum from our CMS vendor is an option, so that we do have ownership of the members and can put privacy assurances into place. Has anyone gone this route?"

== SmartPatients ==

"About three years ago an organisation called Smart Patients was started from a previous list forum called ACOR. It supports all medical conditions with a set of communities and we created one for HLRCC.The admin and IT support are second to none. We have encouraged the Facebook group to become members and about two thirds have 200 out of 300 The Facebook group continues but we have people in Smart Patients with no Facebook account so we have some cross communication issues."

"I signed up for SmartPatients to check it out and registered for a group (or tag in SP) for a brain condition relevant to our syndrome. I found it mildly glitchy (not terrible, but not thrilling either) and the group had seen very light use. I found that via tags in posts, I could access other conditions that I’m not sure I was supposed to be able to access. I think it could have potential, but it seemed like it may have lost momentum to me."

"SmartPatients has the concept that all conversations of all communities are accessible instead of having a separate silo for each condition. People can be members of several communities and can follow tags that they are interested in. This means that for example information about a particular drug side effect can be found across conditions. It is very open to any suggestion for improvement via a Site Feedback tag. You will always get a personal reply."

==Twitter==

===Introduction===
Twitter is a social networking site that begins with the question, "What are you doing?" Twitter is much more streamlined than facebook; user profiles are limited to name, location and a 140 character bio. Twitter status updates or "tweets" are also limited to 140 characters. They can include links to outside sites but cannot included embedded photos, video or other content. Twitter users can upload a profile picture and [http://mashable.com/2009/05/23/twitter-backgrounds/ create a customized background] for their page but cannot make further customizations.

===Terminology===
'''Tweet''': A message/status update on Twitter of 140 characters or less.
 '''@''': Putting the @ sign before a twitter username (i.e. @geneticalliance) will create a link to that person's Twitter page within your tweet
 '''RT''' or '''Re-tweet''': When a user re-broadcasts a tweet written by someone else. These posts usually begin with "RT @twitteruser:" to give credit to the person who wrote the original tweet.
 '''Hashtag''' or '''#''': This is a way of denoting a keyword of conversation topic. The word after the hashtag is clickable and will bring you to a display of every other Tweet which contains the same hashtag. These can be used to create a meta-dialogue or to track the conversation about a certain topic. Sometimes groups will schedule chats on Twitter, which are identified by a specific hashtag. Users can join in the chat just by clicking on the hashtag or by using a third-party site such as [http://www.tweetchat.com Tweet Chat].

===Twitter Clients===
A Twitter client can often provide more features and functionality than the main website. Although your content still appears on Twitter, and is still subject to the same limitations, a small line underneath your post will let others know what client you are using; i.e. "via TweetDeck." Some clients allow you to manage more than one Twitter account from the same place, and many will also let you update Facebook, LinkedIn and other social media sites simultaneously. Some also allow you to schedule your tweets to post at a later time.

Here are some popular Twitter clients:
*[http://www.hootsuite.com Hoot Suite]
*[http://www.tweetdeck.com Tweet Deck]
*[http://www.tweetmeme.com Tweet Meme]

===Best Practices===
'''Follow people who follow you''' - If someone follows you, it is considered courteous to follow them back. If you are concerned that following too many people will clog up your Twitter stream, create a list of those most important to you so you don't miss out on anything they are saying.
 '''Re-tweet''' - It's that simple. If someone says something funny, interesting or thought-provoking, share it with your network. It's a great way to get them to notice you and maybe remember you the next time you want your own content re-tweeted. Always make sure to start a re-tweet with "RT @username:" Twitter doesn't do this automatically when you click the re-tweet button; if you just click the button, your RT won't show up in their @ feed, so you won't get credit for helping out!
 '''Get involved in the dialogue''' - Twitter is not a place for wallflowers. It's also not a place to constantly promote yourself or your brand. There is a place for that, but self-promotion should make up less than 10% of your tweets, on average. If you participate in the conversation and post content that is valuable to your followers, you will form lasting relationships which can translate to valuable partnerships on the web and in the real world.

==Discussion Forums==
===Teen Discussion Forum===
Teen discussion forums are online discussion sites for teenagers to share their stories and experiences with one another. People participating in the forum may cultivate social bonds and interest groups from a topic made from the discussions. Since participating teenagers will most likely be underage, it will require a different set of development and maintenance methods than the ones used for a regular discussion forum. Here are several issues to consider:

'''Who would be the administrator for such a site?

An administrator is necessary for two reasons:
*Kids might end up inadvertently submitting incorrect medical information that could then go viral
*There is the risk of improper posts (sexual, harassing, flaming content…)

'''Should a Listserv or a chat area be offered?

Again, both would require supervision and the time and effort of a staff member.

'''What other issues do I need to look out for?

There is a great deal of liability involved when dealing with any activity including minors. Some cyber insurance would not cover such an undertaking – at least not without resistance and a costly rider.

==How do I keep up?==

Tips provided by Jim Moore

'''Facebook'''

I did several things to keep track of FB activity—this is my plan. If it doesn’t work for you, please ignore it:

# Regular searches for new groups and pages. Use the same search engine word strings you’d use on Google and mix them up. You will find them.
# Join the groups...and be forthright about who you are.
##If the groups refuse to admit you, infiltrate with another volunteer who is “just a parent.” Don’t use official organization reps for this. Just pick a “friend” you trust who’s not on the board or a committee, etc. and have them join.
# Turn on “notifications” for each group. Turn on “email” in your notifications settings. Select ALL posts to the group for notifications.
## Prepare for a deluge of email notifications.
##Note that threads have “subject” lines, so if a thread does not pertain, sort by subject and delete the whole lot of ‘em.
#Skim ALL subject matter looking for “opportunities.” (Prioritize to those message threads where real expertise is required.) I define opportunity as:
##Newbie looking for solid info;
##Misinformation;
##“I dunnos”
##And so on.
##Above all, wait for “critical mass” to build in the message thread. If you respond to the initial post, only the questioner will see it. Wait until 15 or 20 people have chimed in and then drop it on ‘em. Thread participants will ALL get a notification of another post to the thread, and they’ll all benefit...and from an organizational marketing point of view, they will all see your organization in action at its best. (obvious exception would be for a critical item where time is of the essence...e.g. prenatal diagnosis or life-threatening situation or “the meeting at the school is tomorrow!”)
#Generate boilerplate. Nothing is more time-consuming than writing the same thing over and over again, and freelancing every response introduces the opportunity for mistakes and omissions.
## Remember: there are really only 10 to 20 questions – asked over and over again – perhaps many permutations, but the right guidance is still the right guidance.
##Create a library of boilerplate by subject.
##Save them in MS Word or similar so you can just open the file, copy and paste.
##Embed links to info on your website prolifically. Drag them to your organization, and use the boilerplate as a preamble to say “find this here and find that there.”
###My philosophy is to never simply hand it to them. Instead, act like a library and have them come and get it. This way, they learn about the library, and they know to come to the library next time they have a question.
##Disclose that it’s boilerplate with a custom intro such as, “[Name], We have guidance on this subject. This is a far more comprehensive response that your answer may require, but you may find it helpful. You may wish to save this for future reference. [insert boilerplate]. At the end of each boilerplate response, remind the reader that it’s boilerplate and point them to where they can find more info.
##Name the files “boilerplate-[subject}” so you can find them using Windows Explorer search tools.
##Keep the boilerplate up-to-date. This is more work than it might seem, because most boilerplate ends up littered with hyperlinks to docs on your site and elsewhere, and much of the baseline guidance needs regular review.
##Don’t be afraid to be comprehensive. I always got rave reviews on the boilerplate and many “secondary” thank-yous from other readers in the thread.
#Be strategic. Don’t “helicopter.” Respect the group and just “show up big time” when it really counts.
#ASK PERMISSION: before posting things like events, research recruitment, fundraising and so on. Most will be accommodating, but if they say “no fundraising” or “just the specific variation we serve”, it’s their group.
#DEBATE: inevitably you’ll encounter some preposterous nonsense or another that can’t be ignored. Debate vigorously but respectfully, and then TRUST THE AUDIENCE to know the difference between nonsense and solid info. Your debate “opponent” will never admit being wrong or admit “defeat,” so that’s not a goal. Make your points well and respectfully, then walk away. (easier said than done sometimes, and this is NOT my forte’) J.

You just read all that. I don’t have to tell you that it’s tons of work. But so is a conference, creating a website, publishing booklets and so on. This is currently where the people are (social media), and you need to go to where the people are and meet them on their turf.

Get help. If you have several volunteers you truly trust, give them your login. Yes, let them impersonate you....within strict guidelines. This is the beauty of boilerplate. The words are tried and true...vetted. Your surrogates are just that...clones who have strict marching orders. And because they are using “your” accounts and memberships, you can see everything they do as they do it. Supervise and train. It will pay off quickly and give you time to focus on other things while still having a huge (or in today’s political vernacular Yuuuuge!) social media presence.

'''Twitter'''

Twitter is even bigger than this, and it involves lots of one-on-one engagement to build followers and pay your dues with those followers. Suffice it to say that Twitter is all about mutual back scratching. I’ll reserve that for another time.

'''Use Multiple Social Media Profiles'''

If you are using your personal profile, the one with photos of your cat and thoughts on the upcoming election, stop. You’re bound to alienate lots of people with your “other” posts.

Your organization profile should be utterly bland on every front other than the organization’s mission.

Create a new, organization-specific profile and use it exclusively for the organization’s messages. Then create a second profile in case Facebook gives you a “time out” for misbehavior of some sort. (too many friend requests, too many duplicate posts to too many groups, etc.) I have two professional profiles:
#First Name Last Name
#First Name Executive Director
They are otherwise identical in virtually every way, so readers really can’t tell one from the other.

Using these methods, I was able to actively participate in approximately 25 Facebook groups worldwide (including 4 condition-specific groups where I was admin), multiple Facebook pages, and 3 Twitter feeds with thousands of followers.
I used “push” tools in Constant Contact to push content to the pages and Twitter, and then I relayed that content to “friendly” groups worldwide. All of that content was very easy to distribute, and the degree to which it was welcomed was directly related to the relationships developed with the other independent groups’ admins.

==Recommended Links==

*[http://www.cdc.gov/healthcommunication/ToolsTemplates/SocialMediaToolkit_BM.pdf?s_cid=tw_eh_135 CDC's Health Communicator's Social Media Toolkit]
*[http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook/ 10 Tips for Non-Profits on Facebook]
*Blog Tips for Nonprofits [http://www.blogtips.org/upcoming-online-media-workshop-and-webinar-for-nonprofits/] and [http://www.blogtips.org/online-communications-for-nonprofits-the-current-trends/]

If you would like to see examples of social media pages, visit Genetic Alliance's pages:

*[http://www.facebook.com/group.php?gid=15453400385&ref=ts http://www.facebook.com/group.php?gid=15453400385&ref=ts]

*[http://www.linkedin.com/companies/genetic-alliance http://www.linkedin.com/companies/genetic-alliance]

*[http://twitter.com/geneticalliance http://twitter.com/geneticalliance]

*[http://www.youtube.com/geneticalliance http://www.youtube.com/geneticalliance]

== Questions and Answers ==

*'''''How has your organization responded to requests from families who want to start a group on Facebook? Is it better to start one as an organization in order to keep control?'''''
** We did start our own Facebook Group and Cause so that we would have some control. We have raised a couple hundred dollars on the site (with literally no work).
**We have a Facebook Causes page and our members have their own Facebook pages. Then they can join our Facebook cause and leave comments and such on the cause page and information on their own pages.
**I think there are several issues to think about here. One is whether you can show up on every blog, online group, MySpace or Facebook venue. I think they are just going to proliferate & at some point you can't control the space/content/representation. The terms and conditions of these online spaces are widely variable. In some everything that's shared/written becomes the property of the sponsor who can edit, use, re-publish or use for publicity. There is no privacy, no ownership, no accountability. Though they seem like "safe spaces", many of them are filled with both spammers and porn folks. Also, many sites are searchable by google or other search engines. Cyberspace is notoriously hard to control, if control is a top priority of the organization. That too requires an investment to maintain. On the other hand, presidential candidates have gotten elected recently using these social networking tools successfully and raised $500 million online, largely from people giving $100 or less.

*'''''What happens if other Facebook Groups or Causes exist for the same condition as mine?'''''
:We as an organization (Cystinosis Research Network) started a Facebook cause (which was very straightforward to do) under the title "Cystinosis". We've raised a few hundred dollars and have had nearly 1,000 join the cause with almost no effort.

:We've recently run across another cause for cystinosis which was started by someone we aren't familiar with. Donations are going to the other advocacy group in the U.S., which is fine, except he used our logo, website address and vision and mission information. I've "facebooked" the cause administrator just to point out the inconsistency and the confusion it might provide for possible donors with no response back.

:Finally, one of our medical advisory board members decided to start a CRN Facebook cause herself, as she didn't find CRN when she searched (our fault, should have titled our cause "CRN" specifically, not the general "cystinosis"). Donations from her cause go to CRN, and frankly, she did a much nicer job than us in setting it up! We've decided that having the two sites is complimentary in the end.

:I guess my point is that Facebook is a fairly uncontrolled space, putting your organization as a cause can provide very easily collected modest donations and raise awareness, but there is always the possibility (as in many situations, I suppose, like blogs, etc.) where other individuals can use information from your organization without your knowledge, which may or may not lead to any significant misunderstandings or harm.

*'''''How does a group go about getting permission to use photos from conferences on social media websites and in enewsletters? Additionally, if photos are used on Facebook, how does 'liking', 'sharing', and 'tagging' interact with privacy violations?'''''

:*Team Sanfilippo has a Facebook page and a private MPS community page as well. We have put posts up on occasion asking permission and parents have responded in several ways. Some have said use whatever you see online of my child, others have sent us a few pictures and and some have said to take anything from their child's personal site we want. So we print those threads out in case of an issue down the road. We've never run into any issues so far.
:*We have a photo/video release at our conferences that we ask families to sign, which basically is a waiver for any electronic or print distribution. However, sometimes families just send us photos via email, etc., to be used in our newsletter and don’t necessarily provide a formal release. For many years before we had an electronic newsletter, the pictures were used in our print newsletter. However, we have now decided to implement a policy wherein we obtain a formal release for use of any photos submitted by any mechanisms. I do have to make the disclaimer that we try not to identify any minor by name in photos. We do have a FB page, and we have “turned off” the ability for anyone other than the administrator to upload photos and our policy is not to upload any photos organizationally of patients. We also have a private password protected online community which does allow the user to upload pictures to their personal page. The community use agreement contains a disclaimer to the effect that although the site is private and password protected, we are not responsible for and cannot protect against the potential use of the photos outside the online community (because a member copies it and uses it elsewhere).

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Blogging]]
*[[Building a Website]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[People and Roles]]
*[[Recruiting]]
**[[Publicity and General Media]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Taking Credit Cards on the Web]]

Social Networking

2018-07-30T20:53:51Z

Aguise: /* Recommended Links */

Social networking sites have seen a dramatic increase in popularity, leaving many advocacy organizations wondering the best way to engage with and integrate this technology into their organizations. Information on [http://www.facebook.com Facebook] is shared below, but feel free to help us expand and include information on other social networking sites, such as [http://www.myspace.com MySpace] and [http://www.twitter.com Twitter].

Social media can be a very useful tool for interacting with your community. Many organizations use social media (e.g. Twitter, Facebook and others) as a broadcast communication tool, updating their community and thepublic about progress or new developments with their registry or biobank. This is just the beginning. Social media can also be used strategically to listen to and engage with your community. [http://www.slideshare.net/Radian6/30-ideas-for-your-2012-social-media-plan Radian6] has created a wonderful resource, 30 ideas for your social media plan in 2012 that provides insight on how to use social media more effectively. Once your social media plan is in place, be sure to [http://blog.kissmetrics.com/science-of-social-timing-1 time your posts] for when your audience is most likely to be listening.

== Facebook ==
=== Where do I start? ===

Facebook has many different ways to be involved as an organization, such as Causes and Groups. It might be easiest to just start with your own personal profile so you understand what your constituents are seeing from the user side. "Friend them,"
watch their behavior, what attracts, what doesn't, join Cause Pages and Fan Pages of other non-profits and get their updates and announcements on Facebook and you'll pick it up. Or find a constituent/volunteer who's already "into it" and ask them to be a "virtual" volunteer leader of your Facebook presence to grow it organically. To learn more about Facebook pages, you can read [[Media:Facebook_Pages_Insider's_Guide.pdf|"The Insider's Guide."]]

The following is one organization's take on how to use Facebook:

Eleni Tsigas

Preeclampsia Foundation

"When you do a Facebook Ad, including Boosted Posts, you can run it to current fans or with an exception criteria that does not include your current Fans. That being said, I would hesitate to boost ANY post unless there was a specific drive/aim in us doing so. Boosting it just to get visibility with no call-to-action is not an effective use of money. Driving general Likes on the other hand, does serve us well and is worth the investment, though if you ever got to the point where you had exhausted potential clients, I would recommend that you take a break for some time.

In addition, Facebook (and social media in general) raises AWARENESS, not funds. Email marketing is much better suited for that purpose, and better yet, peer-to-peer requests. Facebook does, however, remind people of important things like "Oh, I should go register for a walk and start fundraising." People make the mistake of assuming it is a panacea instead of one more tool in the communication arsenal.”

*'''Causes''' 

Any Facebook users will be able to see all your NonProfit's Cause Pages in one place that looks like [https://apps.facebook.com/causes/ this]. But the NPO as an entity won't be able to manage relationships with these User-created Cause Pages without this approval from the Cause Application Company, Project Agape.

As an approved Partner, you'll be granted access to a different background ADMIN page that through a portal page that only organizations are be able to access. From there, you'll be able to "designate" which of all the Cause Pages out there is the "official" Cause Page of the organization from that ADMIN area. You can still need to create your own Cause page from the User side as a leader of the organization and then designate THAT one as the "official" Cause page. Or choose None as "official" and just receive donations as the chosen beneficiary of the multiple pages created to support your cause.

You'll also have options from your ADMIN area to "Manage Causes" and can "disassociate" any that you don't want to be associated with your Cause. You can also "Manage Donations," where you can see all your donors, download reports to add them to your donor database, have options for "thank them" using Facebook, etc. One point to be aware of: The official Causes Partner reports often list as Anonymous some contributions for which an individual donor is identified on the specific Cause page where the donation was made.(This depends on which box the donor checks at the time of the donation.) Unless you keep track of each associated Cause page, you will miss the opportunity to thank some donors who are identified on the individual Cause page but not on the Causes Partner reports. You can also administer Cause Petitions within your ADMIN area where you appeal for people to "sign" a collective petition advocating for some sort of change.

Then encourage any of your constituents who want to create their own Cause Page to do so and ALL of them can be set to "benefit" your 501(c)(3). Anyone can create a Cause page if they add the Cause application to their Facebook Profile. They can join lots of Causes and create multiple Cause pages for causes they care about. They "choose" who their Cause page will benefit from any nonprofit organization that is listed in [http://www.guidestar.org Guidestar database].

Then keep creating ways in your campaigns/appeals/advocacy alerts to give your constituents a way to viral your message to everyone on their Cause page with "canned" text/graphics/links back to page on your website and you've got a movement.
People always respond best to appeals made by people they know. Empower your constituents to be ambassadors of your messages. They get the experience of helping the cause they care about and have passion to share with others they know. You get people to reach more people with your appeals for the cause than you would ever reach in a top-down message delivery strategy.

More good information about Causes can be accessed from Facebook's [https://apps.facebook.com/causes/ Causes' FAQs] and [http://apps.facebook.com/causes/about?m=736620da here].

*'''Groups''' 

Facebook Group pages are very easy to create also, but are more like an open or closed online group meeting space. Doesn't
have near the tools for NPO communications and outreach and fundraising, but it has it functions. We have a group page for volunteers [http://www.facebook.com/groups.php?ref=sb#/group.php?gid=11572144041 here], but we haven't done a lot with it except let it grow and share "news" posts and links. It's still grown to over 600 in last year.

An idea for patient privacy is to open your group page only to those who have signed up as members of your Association.
Those who are NOT members, can be messaged as to their affiliation (I have a sister with this disease, my child has this disease…)
The message is sent by going to the inquirer's own FB page and clicking on SEND A MESSAGE.
It not only helps with patient privacy, but provides new members.

The only drawback to this system is if the person does not have the message ability
on their FB page when one goes to message them to ask their affiliation….

Also, there are sometimes patients who, for various reasons, start another FB page
on the same disease… these are usually not a big draw from the "official" disease page and
serve a purpose for their group. One can ask them to be a Friend, posting when
appropriate on these other pages, but not so often as to appear to be FB-stalking them.

* 10 Tips for Non-Profits on Facebook -
http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook

*'''Discussion following #deleteFacebook in 2018''' 

---"The HLRCC Family Alliance has wrestled with the use of the Facebook Group and other forums for some years.
We made the Facebook group secret which means that not only are posts private, but the member list is also. As it is not found by search people have to find it via the website and send an email to contact and receive an invitation to join. Or people can add family and Facebook friends.
We were finding nevertheless that there were limitations on long-term functionality with older posts being difficult to find if longer than a year or two old.
About three years ago an organisation called Smart Patients was started from a previous list forum called ACOR. It supports all medical conditions with a set of communities and we created one for HLRCC.The admin and IT support are second to none. We have encouraged the Facebook group to become members and about two thirds have 200 out of 300
The Facebook group continues but we have people in Smart Patients with no Facebook account so we have some cross communication issues."

---"I’m glad to see you mentioning Smart Patients. I recently joined Smart Patients because of a health condition with which I was diagnosed. From the patient perspective, it seems superbly run, though I know absolutely nothing about what happens behind the curtain. I recently heard something that stuck with me. It was on a NPR program about Facebook moving to a pay for service model. “If you’re not PAYING for the product, you ARE the product.” One concern I have about Smart Patients is that, like Facebook, it does share anonymized data with third parties without the consent of members: https://www.smartpatients.com/faq#what-is-smart-patients."

---"When I was in charge of social media for The XLH Network, Inc., I resisted creating a Facebook group, for all the reasons that are now being addressed -- concerns about privacy, even in a closed group; the lack of email addresses for our database (so we didn't "own" the membership -- Facebook did); and dividing up our community into a variety of platforms. I don't know for sure that it was the right decision, but at least it meant that the Network has always had an alternative to Facebook in place.

The Network started as a listserv, and then the membership transferred to a forum. Unfortunately, forums aren't as easy/convenient to use as Facebook (although they offer a lot of benefits, including being able to organize responses by topic, which makes them highly searchable, and you can collect a lot of advice on repeat topics over the years), so it's difficult to get engagement there. But at least the nonprofit retains ownership of the membership, which it doesn't have with any interactions on Facebook, .

Since we had a forum already, we didn't need a platform like SmartPatients or PatientsLikeMe.com, and creating accounts with them would have split our community even further (some at Facebook, some at the Network's forum and some at these other platforms). Personally, both of those options worry me in much the same way that Facebook does, since they're FOR-PROFIT entities, based on their dot-com URLs.

To some extent, in this day and age, it's necessary to split the community and offer a variety of platforms for discussion -- some people just won't use a forum and some just won't use Facebook, and so on. (We considered creating a Google group, but just didn't have the experienced personnel to monitor it, and all platforms need monitoring.) So the Network maintains a Facebook page, but encourages taking private discussion over at the forum.

Just to throw out another concern with Facebook -- a few months ago, some consultants started stalking our patient community on Facebook. I don't even know how they did it, because I wasn't able to duplicate their search results, but they were able to find out who on Facebook mentioned XLH in their PRIVATE timelines/profiles. The consultants then sent private messages to those people to ask them to participate in some research. At first, we thought they were scraping info from people who posted to the Network's page, which was bad enough, but it appeared to go beyond that, to people who had never posted to the page, but mentioned XLH in their private timelines. I still don't know how they did that, but it's worrisome."

---"Our Facebook group pre-dates the organization that I run. I am heavily invested in it, but it’s not under our organization. I think for now it will continue to be most appropriate for our condition. I see a lot of benefits to the FB platform for our patient families - the cross talk with groups for comorbidities and the ability to message and friend other families. I’ve learned a lot about other patients from what they post outside of the group, just seeing their everyday lives, that helps me as a caregiver and as an advocate. That is one thing that you would never get from a stand alone forum. That said, it’s pretty clear that Facebook doesn’t really care about group users and there are plenty of frustrating things about the features for groups.

I’ve set up Vanilla Forums for another organization:
https://vanillaforums.com/en/software/
We set up the self-hosted open source product, so it is free but has to be maintained. I think for most groups I’d recommend using their paid, hosted product though. It’s not cheap. I wonder if they may have some flexible pricing for non-profits though.

The Chordoma Foundation launched a community recently on this platform
https://personifycorp.com/small-world-community/
I’ve been curious about that but don’t know anymore than what they have publicized about it.

I signed up for SmartPatients to check it out and registered for a group (or tag in SP) for a brain condition relevant to our syndrome. I found it mildly glitchy (not terrible, but not thrilling either) and the group had seen very light use. I found that via tags in posts, I could access other conditions that I’m not sure I was supposed to be able to access. I think it could have potential, but it seemed like it may have lost momentum to me.

I think this is an interesting conversation, I’d love to see better platforms for our groups flower. But for us there’s not a strong need yet I think."

---"We have been struggling with this as well for several years now. The largest and most active private FB group for our patient community was started by a group of patients and is not administrated by us or any organization. From the very beginning I have been struggling to figure out community forum options because I never felt comfortable with a private FB group for all the reasons already stated here. So we did start a Smart patient community, but it hasn’t gotten the traction we had hoped.

We have discussed this often with the Genetic Alliance to see if there was a solution as part of the PEER platform. Since it is non profit and already has some strong privacy built into it, perhaps if enough of the groups on the PEER platform are interested it is something we could pursue.

Our other thought is to see if building out a private community forum from our CMS vendor is an option, so that we do have ownership of the members and can put privacy assurances into place. Has anyone gone this route?"

== SmartPatients ==

"About three years ago an organisation called Smart Patients was started from a previous list forum called ACOR. It supports all medical conditions with a set of communities and we created one for HLRCC.The admin and IT support are second to none. We have encouraged the Facebook group to become members and about two thirds have 200 out of 300 The Facebook group continues but we have people in Smart Patients with no Facebook account so we have some cross communication issues."

"I signed up for SmartPatients to check it out and registered for a group (or tag in SP) for a brain condition relevant to our syndrome. I found it mildly glitchy (not terrible, but not thrilling either) and the group had seen very light use. I found that via tags in posts, I could access other conditions that I’m not sure I was supposed to be able to access. I think it could have potential, but it seemed like it may have lost momentum to me."

"SmartPatients has the concept that all conversations of all communities are accessible instead of having a separate silo for each condition. People can be members of several communities and can follow tags that they are interested in. This means that for example information about a particular drug side effect can be found across conditions. It is very open to any suggestion for improvement via a Site Feedback tag. You will always get a personal reply."

==Twitter==

===Introduction===
Twitter is a social networking site that begins with the question, "What are you doing?" Twitter is much more streamlined than facebook; user profiles are limited to name, location and a 140 character bio. Twitter status updates or "tweets" are also limited to 140 characters. They can include links to outside sites but cannot included embedded photos, video or other content. Twitter users can upload a profile picture and [http://mashable.com/2009/05/23/twitter-backgrounds/ create a customized background] for their page but cannot make further customizations.

===Terminology===
'''Tweet''': A message/status update on Twitter of 140 characters or less.
 '''@''': Putting the @ sign before a twitter username (i.e. @geneticalliance) will create a link to that person's Twitter page within your tweet
 '''RT''' or '''Re-tweet''': When a user re-broadcasts a tweet written by someone else. These posts usually begin with "RT @twitteruser:" to give credit to the person who wrote the original tweet.
 '''Hashtag''' or '''#''': This is a way of denoting a keyword of conversation topic. The word after the hashtag is clickable and will bring you to a display of every other Tweet which contains the same hashtag. These can be used to create a meta-dialogue or to track the conversation about a certain topic. Sometimes groups will schedule chats on Twitter, which are identified by a specific hashtag. Users can join in the chat just by clicking on the hashtag or by using a third-party site such as [http://www.tweetchat.com Tweet Chat].

===Twitter Clients===
A Twitter client can often provide more features and functionality than the main website. Although your content still appears on Twitter, and is still subject to the same limitations, a small line underneath your post will let others know what client you are using; i.e. "via TweetDeck." Some clients allow you to manage more than one Twitter account from the same place, and many will also let you update Facebook, LinkedIn and other social media sites simultaneously. Some also allow you to schedule your tweets to post at a later time.

Here are some popular Twitter clients:
*[http://www.hootsuite.com Hoot Suite]
*[http://www.tweetdeck.com Tweet Deck]
*[http://www.tweetmeme.com Tweet Meme]

===Best Practices===
'''Follow people who follow you''' - If someone follows you, it is considered courteous to follow them back. If you are concerned that following too many people will clog up your Twitter stream, create a list of those most important to you so you don't miss out on anything they are saying.
 '''Re-tweet''' - It's that simple. If someone says something funny, interesting or thought-provoking, share it with your network. It's a great way to get them to notice you and maybe remember you the next time you want your own content re-tweeted. Always make sure to start a re-tweet with "RT @username:" Twitter doesn't do this automatically when you click the re-tweet button; if you just click the button, your RT won't show up in their @ feed, so you won't get credit for helping out!
 '''Get involved in the dialogue''' - Twitter is not a place for wallflowers. It's also not a place to constantly promote yourself or your brand. There is a place for that, but self-promotion should make up less than 10% of your tweets, on average. If you participate in the conversation and post content that is valuable to your followers, you will form lasting relationships which can translate to valuable partnerships on the web and in the real world.

==Discussion Forums==
===Teen Discussion Forum===
Teen discussion forums are online discussion sites for teenagers to share their stories and experiences with one another. People participating in the forum may cultivate social bonds and interest groups from a topic made from the discussions. Since participating teenagers will most likely be underage, it will require a different set of development and maintenance methods than the ones used for a regular discussion forum. Here are several issues to consider:

'''Who would be the administrator for such a site?

An administrator is necessary for two reasons:
*Kids might end up inadvertently submitting incorrect medical information that could then go viral
*There is the risk of improper posts (sexual, harassing, flaming content…)

'''Should a Listserv or a chat area be offered?

Again, both would require supervision and the time and effort of a staff member.

'''What other issues do I need to look out for?

There is a great deal of liability involved when dealing with any activity including minors. Some cyber insurance would not cover such an undertaking – at least not without resistance and a costly rider.

==How do I keep up?==

Tips provided by Jim Moore

'''Facebook'''

I did several things to keep track of FB activity—this is my plan. If it doesn’t work for you, please ignore it:

# Regular searches for new groups and pages. Use the same search engine word strings you’d use on Google and mix them up. You will find them.
# Join the groups...and be forthright about who you are.
##If the groups refuse to admit you, infiltrate with another volunteer who is “just a parent.” Don’t use official organization reps for this. Just pick a “friend” you trust who’s not on the board or a committee, etc. and have them join.
# Turn on “notifications” for each group. Turn on “email” in your notifications settings. Select ALL posts to the group for notifications.
## Prepare for a deluge of email notifications.
##Note that threads have “subject” lines, so if a thread does not pertain, sort by subject and delete the whole lot of ‘em.
#Skim ALL subject matter looking for “opportunities.” (Prioritize to those message threads where real expertise is required.) I define opportunity as:
##Newbie looking for solid info;
##Misinformation;
##“I dunnos”
##And so on.
##Above all, wait for “critical mass” to build in the message thread. If you respond to the initial post, only the questioner will see it. Wait until 15 or 20 people have chimed in and then drop it on ‘em. Thread participants will ALL get a notification of another post to the thread, and they’ll all benefit...and from an organizational marketing point of view, they will all see your organization in action at its best. (obvious exception would be for a critical item where time is of the essence...e.g. prenatal diagnosis or life-threatening situation or “the meeting at the school is tomorrow!”)
#Generate boilerplate. Nothing is more time-consuming than writing the same thing over and over again, and freelancing every response introduces the opportunity for mistakes and omissions.
## Remember: there are really only 10 to 20 questions – asked over and over again – perhaps many permutations, but the right guidance is still the right guidance.
##Create a library of boilerplate by subject.
##Save them in MS Word or similar so you can just open the file, copy and paste.
##Embed links to info on your website prolifically. Drag them to your organization, and use the boilerplate as a preamble to say “find this here and find that there.”
###My philosophy is to never simply hand it to them. Instead, act like a library and have them come and get it. This way, they learn about the library, and they know to come to the library next time they have a question.
##Disclose that it’s boilerplate with a custom intro such as, “[Name], We have guidance on this subject. This is a far more comprehensive response that your answer may require, but you may find it helpful. You may wish to save this for future reference. [insert boilerplate]. At the end of each boilerplate response, remind the reader that it’s boilerplate and point them to where they can find more info.
##Name the files “boilerplate-[subject}” so you can find them using Windows Explorer search tools.
##Keep the boilerplate up-to-date. This is more work than it might seem, because most boilerplate ends up littered with hyperlinks to docs on your site and elsewhere, and much of the baseline guidance needs regular review.
##Don’t be afraid to be comprehensive. I always got rave reviews on the boilerplate and many “secondary” thank-yous from other readers in the thread.
#Be strategic. Don’t “helicopter.” Respect the group and just “show up big time” when it really counts.
#ASK PERMISSION: before posting things like events, research recruitment, fundraising and so on. Most will be accommodating, but if they say “no fundraising” or “just the specific variation we serve”, it’s their group.
#DEBATE: inevitably you’ll encounter some preposterous nonsense or another that can’t be ignored. Debate vigorously but respectfully, and then TRUST THE AUDIENCE to know the difference between nonsense and solid info. Your debate “opponent” will never admit being wrong or admit “defeat,” so that’s not a goal. Make your points well and respectfully, then walk away. (easier said than done sometimes, and this is NOT my forte’) J.

You just read all that. I don’t have to tell you that it’s tons of work. But so is a conference, creating a website, publishing booklets and so on. This is currently where the people are (social media), and you need to go to where the people are and meet them on their turf.

Get help. If you have several volunteers you truly trust, give them your login. Yes, let them impersonate you....within strict guidelines. This is the beauty of boilerplate. The words are tried and true...vetted. Your surrogates are just that...clones who have strict marching orders. And because they are using “your” accounts and memberships, you can see everything they do as they do it. Supervise and train. It will pay off quickly and give you time to focus on other things while still having a huge (or in today’s political vernacular Yuuuuge!) social media presence.

'''Twitter'''

Twitter is even bigger than this, and it involves lots of one-on-one engagement to build followers and pay your dues with those followers. Suffice it to say that Twitter is all about mutual back scratching. I’ll reserve that for another time.

'''Use Multiple Social Media Profiles'''

If you are using your personal profile, the one with photos of your cat and thoughts on the upcoming election, stop. You’re bound to alienate lots of people with your “other” posts.

Your organization profile should be utterly bland on every front other than the organization’s mission.

Create a new, organization-specific profile and use it exclusively for the organization’s messages. Then create a second profile in case Facebook gives you a “time out” for misbehavior of some sort. (too many friend requests, too many duplicate posts to too many groups, etc.) I have two professional profiles:
#First Name Last Name
#First Name Executive Director
They are otherwise identical in virtually every way, so readers really can’t tell one from the other.

Using these methods, I was able to actively participate in approximately 25 Facebook groups worldwide (including 4 condition-specific groups where I was admin), multiple Facebook pages, and 3 Twitter feeds with thousands of followers.
I used “push” tools in Constant Contact to push content to the pages and Twitter, and then I relayed that content to “friendly” groups worldwide. All of that content was very easy to distribute, and the degree to which it was welcomed was directly related to the relationships developed with the other independent groups’ admins.

==Recommended Links==

*[http://www.casefoundation.org/social-media-tutorials The Case Foundation's Social Media Tutorials]
*[http://www.cdc.gov/healthcommunication/ToolsTemplates/SocialMediaToolkit_BM.pdf?s_cid=tw_eh_135 CDC's Health Communicator's Social Media Toolkit]
*[http://www.youtube.com/t/ngo_tips YouTube Tips for NGOs]
*[http://ow.ly/35h1M Social Media: Tips and Tricks.]
*[http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook/ 10 Tips for Non-Profits on Facebook]
*Blog Tips for Nonprofits [http://www.blogtips.org/upcoming-online-media-workshop-and-webinar-for-nonprofits/] and [http://www.blogtips.org/online-communications-for-nonprofits-the-current-trends/]

If you would like to see examples of social media pages, visit Genetic Alliance's pages:

*[http://www.facebook.com/group.php?gid=15453400385&ref=ts http://www.facebook.com/group.php?gid=15453400385&ref=ts]

*[http://www.linkedin.com/companies/genetic-alliance http://www.linkedin.com/companies/genetic-alliance]

*[http://twitter.com/geneticalliance http://twitter.com/geneticalliance]

*[http://www.youtube.com/geneticalliance http://www.youtube.com/geneticalliance]

== Questions and Answers ==

*'''''How has your organization responded to requests from families who want to start a group on Facebook? Is it better to start one as an organization in order to keep control?'''''
** We did start our own Facebook Group and Cause so that we would have some control. We have raised a couple hundred dollars on the site (with literally no work).
**We have a Facebook Causes page and our members have their own Facebook pages. Then they can join our Facebook cause and leave comments and such on the cause page and information on their own pages.
**I think there are several issues to think about here. One is whether you can show up on every blog, online group, MySpace or Facebook venue. I think they are just going to proliferate & at some point you can't control the space/content/representation. The terms and conditions of these online spaces are widely variable. In some everything that's shared/written becomes the property of the sponsor who can edit, use, re-publish or use for publicity. There is no privacy, no ownership, no accountability. Though they seem like "safe spaces", many of them are filled with both spammers and porn folks. Also, many sites are searchable by google or other search engines. Cyberspace is notoriously hard to control, if control is a top priority of the organization. That too requires an investment to maintain. On the other hand, presidential candidates have gotten elected recently using these social networking tools successfully and raised $500 million online, largely from people giving $100 or less.

*'''''What happens if other Facebook Groups or Causes exist for the same condition as mine?'''''
:We as an organization (Cystinosis Research Network) started a Facebook cause (which was very straightforward to do) under the title "Cystinosis". We've raised a few hundred dollars and have had nearly 1,000 join the cause with almost no effort.

:We've recently run across another cause for cystinosis which was started by someone we aren't familiar with. Donations are going to the other advocacy group in the U.S., which is fine, except he used our logo, website address and vision and mission information. I've "facebooked" the cause administrator just to point out the inconsistency and the confusion it might provide for possible donors with no response back.

:Finally, one of our medical advisory board members decided to start a CRN Facebook cause herself, as she didn't find CRN when she searched (our fault, should have titled our cause "CRN" specifically, not the general "cystinosis"). Donations from her cause go to CRN, and frankly, she did a much nicer job than us in setting it up! We've decided that having the two sites is complimentary in the end.

:I guess my point is that Facebook is a fairly uncontrolled space, putting your organization as a cause can provide very easily collected modest donations and raise awareness, but there is always the possibility (as in many situations, I suppose, like blogs, etc.) where other individuals can use information from your organization without your knowledge, which may or may not lead to any significant misunderstandings or harm.

*'''''How does a group go about getting permission to use photos from conferences on social media websites and in enewsletters? Additionally, if photos are used on Facebook, how does 'liking', 'sharing', and 'tagging' interact with privacy violations?'''''

:*Team Sanfilippo has a Facebook page and a private MPS community page as well. We have put posts up on occasion asking permission and parents have responded in several ways. Some have said use whatever you see online of my child, others have sent us a few pictures and and some have said to take anything from their child's personal site we want. So we print those threads out in case of an issue down the road. We've never run into any issues so far.
:*We have a photo/video release at our conferences that we ask families to sign, which basically is a waiver for any electronic or print distribution. However, sometimes families just send us photos via email, etc., to be used in our newsletter and don’t necessarily provide a formal release. For many years before we had an electronic newsletter, the pictures were used in our print newsletter. However, we have now decided to implement a policy wherein we obtain a formal release for use of any photos submitted by any mechanisms. I do have to make the disclaimer that we try not to identify any minor by name in photos. We do have a FB page, and we have “turned off” the ability for anyone other than the administrator to upload photos and our policy is not to upload any photos organizationally of patients. We also have a private password protected online community which does allow the user to upload pictures to their personal page. The community use agreement contains a disclaimer to the effect that although the site is private and password protected, we are not responsible for and cannot protect against the potential use of the photos outside the online community (because a member copies it and uses it elsewhere).

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Blogging]]
*[[Building a Website]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[People and Roles]]
*[[Recruiting]]
**[[Publicity and General Media]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Taking Credit Cards on the Web]]

Social Networking

2018-07-30T20:53:19Z

Aguise: /* Recommended Links */

Social networking sites have seen a dramatic increase in popularity, leaving many advocacy organizations wondering the best way to engage with and integrate this technology into their organizations. Information on [http://www.facebook.com Facebook] is shared below, but feel free to help us expand and include information on other social networking sites, such as [http://www.myspace.com MySpace] and [http://www.twitter.com Twitter].

Social media can be a very useful tool for interacting with your community. Many organizations use social media (e.g. Twitter, Facebook and others) as a broadcast communication tool, updating their community and thepublic about progress or new developments with their registry or biobank. This is just the beginning. Social media can also be used strategically to listen to and engage with your community. [http://www.slideshare.net/Radian6/30-ideas-for-your-2012-social-media-plan Radian6] has created a wonderful resource, 30 ideas for your social media plan in 2012 that provides insight on how to use social media more effectively. Once your social media plan is in place, be sure to [http://blog.kissmetrics.com/science-of-social-timing-1 time your posts] for when your audience is most likely to be listening.

== Facebook ==
=== Where do I start? ===

Facebook has many different ways to be involved as an organization, such as Causes and Groups. It might be easiest to just start with your own personal profile so you understand what your constituents are seeing from the user side. "Friend them,"
watch their behavior, what attracts, what doesn't, join Cause Pages and Fan Pages of other non-profits and get their updates and announcements on Facebook and you'll pick it up. Or find a constituent/volunteer who's already "into it" and ask them to be a "virtual" volunteer leader of your Facebook presence to grow it organically. To learn more about Facebook pages, you can read [[Media:Facebook_Pages_Insider's_Guide.pdf|"The Insider's Guide."]]

The following is one organization's take on how to use Facebook:

Eleni Tsigas

Preeclampsia Foundation

"When you do a Facebook Ad, including Boosted Posts, you can run it to current fans or with an exception criteria that does not include your current Fans. That being said, I would hesitate to boost ANY post unless there was a specific drive/aim in us doing so. Boosting it just to get visibility with no call-to-action is not an effective use of money. Driving general Likes on the other hand, does serve us well and is worth the investment, though if you ever got to the point where you had exhausted potential clients, I would recommend that you take a break for some time.

In addition, Facebook (and social media in general) raises AWARENESS, not funds. Email marketing is much better suited for that purpose, and better yet, peer-to-peer requests. Facebook does, however, remind people of important things like "Oh, I should go register for a walk and start fundraising." People make the mistake of assuming it is a panacea instead of one more tool in the communication arsenal.”

*'''Causes''' 

Any Facebook users will be able to see all your NonProfit's Cause Pages in one place that looks like [https://apps.facebook.com/causes/ this]. But the NPO as an entity won't be able to manage relationships with these User-created Cause Pages without this approval from the Cause Application Company, Project Agape.

As an approved Partner, you'll be granted access to a different background ADMIN page that through a portal page that only organizations are be able to access. From there, you'll be able to "designate" which of all the Cause Pages out there is the "official" Cause Page of the organization from that ADMIN area. You can still need to create your own Cause page from the User side as a leader of the organization and then designate THAT one as the "official" Cause page. Or choose None as "official" and just receive donations as the chosen beneficiary of the multiple pages created to support your cause.

You'll also have options from your ADMIN area to "Manage Causes" and can "disassociate" any that you don't want to be associated with your Cause. You can also "Manage Donations," where you can see all your donors, download reports to add them to your donor database, have options for "thank them" using Facebook, etc. One point to be aware of: The official Causes Partner reports often list as Anonymous some contributions for which an individual donor is identified on the specific Cause page where the donation was made.(This depends on which box the donor checks at the time of the donation.) Unless you keep track of each associated Cause page, you will miss the opportunity to thank some donors who are identified on the individual Cause page but not on the Causes Partner reports. You can also administer Cause Petitions within your ADMIN area where you appeal for people to "sign" a collective petition advocating for some sort of change.

Then encourage any of your constituents who want to create their own Cause Page to do so and ALL of them can be set to "benefit" your 501(c)(3). Anyone can create a Cause page if they add the Cause application to their Facebook Profile. They can join lots of Causes and create multiple Cause pages for causes they care about. They "choose" who their Cause page will benefit from any nonprofit organization that is listed in [http://www.guidestar.org Guidestar database].

Then keep creating ways in your campaigns/appeals/advocacy alerts to give your constituents a way to viral your message to everyone on their Cause page with "canned" text/graphics/links back to page on your website and you've got a movement.
People always respond best to appeals made by people they know. Empower your constituents to be ambassadors of your messages. They get the experience of helping the cause they care about and have passion to share with others they know. You get people to reach more people with your appeals for the cause than you would ever reach in a top-down message delivery strategy.

More good information about Causes can be accessed from Facebook's [https://apps.facebook.com/causes/ Causes' FAQs] and [http://apps.facebook.com/causes/about?m=736620da here].

*'''Groups''' 

Facebook Group pages are very easy to create also, but are more like an open or closed online group meeting space. Doesn't
have near the tools for NPO communications and outreach and fundraising, but it has it functions. We have a group page for volunteers [http://www.facebook.com/groups.php?ref=sb#/group.php?gid=11572144041 here], but we haven't done a lot with it except let it grow and share "news" posts and links. It's still grown to over 600 in last year.

An idea for patient privacy is to open your group page only to those who have signed up as members of your Association.
Those who are NOT members, can be messaged as to their affiliation (I have a sister with this disease, my child has this disease…)
The message is sent by going to the inquirer's own FB page and clicking on SEND A MESSAGE.
It not only helps with patient privacy, but provides new members.

The only drawback to this system is if the person does not have the message ability
on their FB page when one goes to message them to ask their affiliation….

Also, there are sometimes patients who, for various reasons, start another FB page
on the same disease… these are usually not a big draw from the "official" disease page and
serve a purpose for their group. One can ask them to be a Friend, posting when
appropriate on these other pages, but not so often as to appear to be FB-stalking them.

* 10 Tips for Non-Profits on Facebook -
http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook

*'''Discussion following #deleteFacebook in 2018''' 

---"The HLRCC Family Alliance has wrestled with the use of the Facebook Group and other forums for some years.
We made the Facebook group secret which means that not only are posts private, but the member list is also. As it is not found by search people have to find it via the website and send an email to contact and receive an invitation to join. Or people can add family and Facebook friends.
We were finding nevertheless that there were limitations on long-term functionality with older posts being difficult to find if longer than a year or two old.
About three years ago an organisation called Smart Patients was started from a previous list forum called ACOR. It supports all medical conditions with a set of communities and we created one for HLRCC.The admin and IT support are second to none. We have encouraged the Facebook group to become members and about two thirds have 200 out of 300
The Facebook group continues but we have people in Smart Patients with no Facebook account so we have some cross communication issues."

---"I’m glad to see you mentioning Smart Patients. I recently joined Smart Patients because of a health condition with which I was diagnosed. From the patient perspective, it seems superbly run, though I know absolutely nothing about what happens behind the curtain. I recently heard something that stuck with me. It was on a NPR program about Facebook moving to a pay for service model. “If you’re not PAYING for the product, you ARE the product.” One concern I have about Smart Patients is that, like Facebook, it does share anonymized data with third parties without the consent of members: https://www.smartpatients.com/faq#what-is-smart-patients."

---"When I was in charge of social media for The XLH Network, Inc., I resisted creating a Facebook group, for all the reasons that are now being addressed -- concerns about privacy, even in a closed group; the lack of email addresses for our database (so we didn't "own" the membership -- Facebook did); and dividing up our community into a variety of platforms. I don't know for sure that it was the right decision, but at least it meant that the Network has always had an alternative to Facebook in place.

The Network started as a listserv, and then the membership transferred to a forum. Unfortunately, forums aren't as easy/convenient to use as Facebook (although they offer a lot of benefits, including being able to organize responses by topic, which makes them highly searchable, and you can collect a lot of advice on repeat topics over the years), so it's difficult to get engagement there. But at least the nonprofit retains ownership of the membership, which it doesn't have with any interactions on Facebook, .

Since we had a forum already, we didn't need a platform like SmartPatients or PatientsLikeMe.com, and creating accounts with them would have split our community even further (some at Facebook, some at the Network's forum and some at these other platforms). Personally, both of those options worry me in much the same way that Facebook does, since they're FOR-PROFIT entities, based on their dot-com URLs.

To some extent, in this day and age, it's necessary to split the community and offer a variety of platforms for discussion -- some people just won't use a forum and some just won't use Facebook, and so on. (We considered creating a Google group, but just didn't have the experienced personnel to monitor it, and all platforms need monitoring.) So the Network maintains a Facebook page, but encourages taking private discussion over at the forum.

Just to throw out another concern with Facebook -- a few months ago, some consultants started stalking our patient community on Facebook. I don't even know how they did it, because I wasn't able to duplicate their search results, but they were able to find out who on Facebook mentioned XLH in their PRIVATE timelines/profiles. The consultants then sent private messages to those people to ask them to participate in some research. At first, we thought they were scraping info from people who posted to the Network's page, which was bad enough, but it appeared to go beyond that, to people who had never posted to the page, but mentioned XLH in their private timelines. I still don't know how they did that, but it's worrisome."

---"Our Facebook group pre-dates the organization that I run. I am heavily invested in it, but it’s not under our organization. I think for now it will continue to be most appropriate for our condition. I see a lot of benefits to the FB platform for our patient families - the cross talk with groups for comorbidities and the ability to message and friend other families. I’ve learned a lot about other patients from what they post outside of the group, just seeing their everyday lives, that helps me as a caregiver and as an advocate. That is one thing that you would never get from a stand alone forum. That said, it’s pretty clear that Facebook doesn’t really care about group users and there are plenty of frustrating things about the features for groups.

I’ve set up Vanilla Forums for another organization:
https://vanillaforums.com/en/software/
We set up the self-hosted open source product, so it is free but has to be maintained. I think for most groups I’d recommend using their paid, hosted product though. It’s not cheap. I wonder if they may have some flexible pricing for non-profits though.

The Chordoma Foundation launched a community recently on this platform
https://personifycorp.com/small-world-community/
I’ve been curious about that but don’t know anymore than what they have publicized about it.

I signed up for SmartPatients to check it out and registered for a group (or tag in SP) for a brain condition relevant to our syndrome. I found it mildly glitchy (not terrible, but not thrilling either) and the group had seen very light use. I found that via tags in posts, I could access other conditions that I’m not sure I was supposed to be able to access. I think it could have potential, but it seemed like it may have lost momentum to me.

I think this is an interesting conversation, I’d love to see better platforms for our groups flower. But for us there’s not a strong need yet I think."

---"We have been struggling with this as well for several years now. The largest and most active private FB group for our patient community was started by a group of patients and is not administrated by us or any organization. From the very beginning I have been struggling to figure out community forum options because I never felt comfortable with a private FB group for all the reasons already stated here. So we did start a Smart patient community, but it hasn’t gotten the traction we had hoped.

We have discussed this often with the Genetic Alliance to see if there was a solution as part of the PEER platform. Since it is non profit and already has some strong privacy built into it, perhaps if enough of the groups on the PEER platform are interested it is something we could pursue.

Our other thought is to see if building out a private community forum from our CMS vendor is an option, so that we do have ownership of the members and can put privacy assurances into place. Has anyone gone this route?"

== SmartPatients ==

"About three years ago an organisation called Smart Patients was started from a previous list forum called ACOR. It supports all medical conditions with a set of communities and we created one for HLRCC.The admin and IT support are second to none. We have encouraged the Facebook group to become members and about two thirds have 200 out of 300 The Facebook group continues but we have people in Smart Patients with no Facebook account so we have some cross communication issues."

"I signed up for SmartPatients to check it out and registered for a group (or tag in SP) for a brain condition relevant to our syndrome. I found it mildly glitchy (not terrible, but not thrilling either) and the group had seen very light use. I found that via tags in posts, I could access other conditions that I’m not sure I was supposed to be able to access. I think it could have potential, but it seemed like it may have lost momentum to me."

"SmartPatients has the concept that all conversations of all communities are accessible instead of having a separate silo for each condition. People can be members of several communities and can follow tags that they are interested in. This means that for example information about a particular drug side effect can be found across conditions. It is very open to any suggestion for improvement via a Site Feedback tag. You will always get a personal reply."

==Twitter==

===Introduction===
Twitter is a social networking site that begins with the question, "What are you doing?" Twitter is much more streamlined than facebook; user profiles are limited to name, location and a 140 character bio. Twitter status updates or "tweets" are also limited to 140 characters. They can include links to outside sites but cannot included embedded photos, video or other content. Twitter users can upload a profile picture and [http://mashable.com/2009/05/23/twitter-backgrounds/ create a customized background] for their page but cannot make further customizations.

===Terminology===
'''Tweet''': A message/status update on Twitter of 140 characters or less.
 '''@''': Putting the @ sign before a twitter username (i.e. @geneticalliance) will create a link to that person's Twitter page within your tweet
 '''RT''' or '''Re-tweet''': When a user re-broadcasts a tweet written by someone else. These posts usually begin with "RT @twitteruser:" to give credit to the person who wrote the original tweet.
 '''Hashtag''' or '''#''': This is a way of denoting a keyword of conversation topic. The word after the hashtag is clickable and will bring you to a display of every other Tweet which contains the same hashtag. These can be used to create a meta-dialogue or to track the conversation about a certain topic. Sometimes groups will schedule chats on Twitter, which are identified by a specific hashtag. Users can join in the chat just by clicking on the hashtag or by using a third-party site such as [http://www.tweetchat.com Tweet Chat].

===Twitter Clients===
A Twitter client can often provide more features and functionality than the main website. Although your content still appears on Twitter, and is still subject to the same limitations, a small line underneath your post will let others know what client you are using; i.e. "via TweetDeck." Some clients allow you to manage more than one Twitter account from the same place, and many will also let you update Facebook, LinkedIn and other social media sites simultaneously. Some also allow you to schedule your tweets to post at a later time.

Here are some popular Twitter clients:
*[http://www.hootsuite.com Hoot Suite]
*[http://www.tweetdeck.com Tweet Deck]
*[http://www.tweetmeme.com Tweet Meme]

===Best Practices===
'''Follow people who follow you''' - If someone follows you, it is considered courteous to follow them back. If you are concerned that following too many people will clog up your Twitter stream, create a list of those most important to you so you don't miss out on anything they are saying.
 '''Re-tweet''' - It's that simple. If someone says something funny, interesting or thought-provoking, share it with your network. It's a great way to get them to notice you and maybe remember you the next time you want your own content re-tweeted. Always make sure to start a re-tweet with "RT @username:" Twitter doesn't do this automatically when you click the re-tweet button; if you just click the button, your RT won't show up in their @ feed, so you won't get credit for helping out!
 '''Get involved in the dialogue''' - Twitter is not a place for wallflowers. It's also not a place to constantly promote yourself or your brand. There is a place for that, but self-promotion should make up less than 10% of your tweets, on average. If you participate in the conversation and post content that is valuable to your followers, you will form lasting relationships which can translate to valuable partnerships on the web and in the real world.

==Discussion Forums==
===Teen Discussion Forum===
Teen discussion forums are online discussion sites for teenagers to share their stories and experiences with one another. People participating in the forum may cultivate social bonds and interest groups from a topic made from the discussions. Since participating teenagers will most likely be underage, it will require a different set of development and maintenance methods than the ones used for a regular discussion forum. Here are several issues to consider:

'''Who would be the administrator for such a site?

An administrator is necessary for two reasons:
*Kids might end up inadvertently submitting incorrect medical information that could then go viral
*There is the risk of improper posts (sexual, harassing, flaming content…)

'''Should a Listserv or a chat area be offered?

Again, both would require supervision and the time and effort of a staff member.

'''What other issues do I need to look out for?

There is a great deal of liability involved when dealing with any activity including minors. Some cyber insurance would not cover such an undertaking – at least not without resistance and a costly rider.

==How do I keep up?==

Tips provided by Jim Moore

'''Facebook'''

I did several things to keep track of FB activity—this is my plan. If it doesn’t work for you, please ignore it:

# Regular searches for new groups and pages. Use the same search engine word strings you’d use on Google and mix them up. You will find them.
# Join the groups...and be forthright about who you are.
##If the groups refuse to admit you, infiltrate with another volunteer who is “just a parent.” Don’t use official organization reps for this. Just pick a “friend” you trust who’s not on the board or a committee, etc. and have them join.
# Turn on “notifications” for each group. Turn on “email” in your notifications settings. Select ALL posts to the group for notifications.
## Prepare for a deluge of email notifications.
##Note that threads have “subject” lines, so if a thread does not pertain, sort by subject and delete the whole lot of ‘em.
#Skim ALL subject matter looking for “opportunities.” (Prioritize to those message threads where real expertise is required.) I define opportunity as:
##Newbie looking for solid info;
##Misinformation;
##“I dunnos”
##And so on.
##Above all, wait for “critical mass” to build in the message thread. If you respond to the initial post, only the questioner will see it. Wait until 15 or 20 people have chimed in and then drop it on ‘em. Thread participants will ALL get a notification of another post to the thread, and they’ll all benefit...and from an organizational marketing point of view, they will all see your organization in action at its best. (obvious exception would be for a critical item where time is of the essence...e.g. prenatal diagnosis or life-threatening situation or “the meeting at the school is tomorrow!”)
#Generate boilerplate. Nothing is more time-consuming than writing the same thing over and over again, and freelancing every response introduces the opportunity for mistakes and omissions.
## Remember: there are really only 10 to 20 questions – asked over and over again – perhaps many permutations, but the right guidance is still the right guidance.
##Create a library of boilerplate by subject.
##Save them in MS Word or similar so you can just open the file, copy and paste.
##Embed links to info on your website prolifically. Drag them to your organization, and use the boilerplate as a preamble to say “find this here and find that there.”
###My philosophy is to never simply hand it to them. Instead, act like a library and have them come and get it. This way, they learn about the library, and they know to come to the library next time they have a question.
##Disclose that it’s boilerplate with a custom intro such as, “[Name], We have guidance on this subject. This is a far more comprehensive response that your answer may require, but you may find it helpful. You may wish to save this for future reference. [insert boilerplate]. At the end of each boilerplate response, remind the reader that it’s boilerplate and point them to where they can find more info.
##Name the files “boilerplate-[subject}” so you can find them using Windows Explorer search tools.
##Keep the boilerplate up-to-date. This is more work than it might seem, because most boilerplate ends up littered with hyperlinks to docs on your site and elsewhere, and much of the baseline guidance needs regular review.
##Don’t be afraid to be comprehensive. I always got rave reviews on the boilerplate and many “secondary” thank-yous from other readers in the thread.
#Be strategic. Don’t “helicopter.” Respect the group and just “show up big time” when it really counts.
#ASK PERMISSION: before posting things like events, research recruitment, fundraising and so on. Most will be accommodating, but if they say “no fundraising” or “just the specific variation we serve”, it’s their group.
#DEBATE: inevitably you’ll encounter some preposterous nonsense or another that can’t be ignored. Debate vigorously but respectfully, and then TRUST THE AUDIENCE to know the difference between nonsense and solid info. Your debate “opponent” will never admit being wrong or admit “defeat,” so that’s not a goal. Make your points well and respectfully, then walk away. (easier said than done sometimes, and this is NOT my forte’) J.

You just read all that. I don’t have to tell you that it’s tons of work. But so is a conference, creating a website, publishing booklets and so on. This is currently where the people are (social media), and you need to go to where the people are and meet them on their turf.

Get help. If you have several volunteers you truly trust, give them your login. Yes, let them impersonate you....within strict guidelines. This is the beauty of boilerplate. The words are tried and true...vetted. Your surrogates are just that...clones who have strict marching orders. And because they are using “your” accounts and memberships, you can see everything they do as they do it. Supervise and train. It will pay off quickly and give you time to focus on other things while still having a huge (or in today’s political vernacular Yuuuuge!) social media presence.

'''Twitter'''

Twitter is even bigger than this, and it involves lots of one-on-one engagement to build followers and pay your dues with those followers. Suffice it to say that Twitter is all about mutual back scratching. I’ll reserve that for another time.

'''Use Multiple Social Media Profiles'''

If you are using your personal profile, the one with photos of your cat and thoughts on the upcoming election, stop. You’re bound to alienate lots of people with your “other” posts.

Your organization profile should be utterly bland on every front other than the organization’s mission.

Create a new, organization-specific profile and use it exclusively for the organization’s messages. Then create a second profile in case Facebook gives you a “time out” for misbehavior of some sort. (too many friend requests, too many duplicate posts to too many groups, etc.) I have two professional profiles:
#First Name Last Name
#First Name Executive Director
They are otherwise identical in virtually every way, so readers really can’t tell one from the other.

Using these methods, I was able to actively participate in approximately 25 Facebook groups worldwide (including 4 condition-specific groups where I was admin), multiple Facebook pages, and 3 Twitter feeds with thousands of followers.
I used “push” tools in Constant Contact to push content to the pages and Twitter, and then I relayed that content to “friendly” groups worldwide. All of that content was very easy to distribute, and the degree to which it was welcomed was directly related to the relationships developed with the other independent groups’ admins.

==Recommended Links==

*[http://www.casefoundation.org/social-media-tutorials The Case Foundation's Social Media Tutorials]
*[http://www.cdc.gov/healthcommunication/ToolsTemplates/SocialMediaToolkit_BM.pdf?s_cid=tw_eh_135 CDC's Health Communicator's Social Media Toolkit]
*[http://www.youtube.com/t/ngo_tips YouTube Tips for NGOs]
*[http://ow.ly/35h1M Social Media: Tips and Tricks.]
*[http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook/ 10 Tips for Non-Profits on Facebook]
*[http://www.blogtips.org/upcoming-online-media-workshop-and-webinar-for-nonprofits/ Blog Tips for Non-Profits] and *[http://www.blogtips.org/online-communications-for-nonprofits-the-current-trends/]

If you would like to see examples of social media pages, visit Genetic Alliance's pages:

*[http://www.facebook.com/group.php?gid=15453400385&ref=ts http://www.facebook.com/group.php?gid=15453400385&ref=ts]

*[http://www.linkedin.com/companies/genetic-alliance http://www.linkedin.com/companies/genetic-alliance]

*[http://twitter.com/geneticalliance http://twitter.com/geneticalliance]

*[http://www.youtube.com/geneticalliance http://www.youtube.com/geneticalliance]

== Questions and Answers ==

*'''''How has your organization responded to requests from families who want to start a group on Facebook? Is it better to start one as an organization in order to keep control?'''''
** We did start our own Facebook Group and Cause so that we would have some control. We have raised a couple hundred dollars on the site (with literally no work).
**We have a Facebook Causes page and our members have their own Facebook pages. Then they can join our Facebook cause and leave comments and such on the cause page and information on their own pages.
**I think there are several issues to think about here. One is whether you can show up on every blog, online group, MySpace or Facebook venue. I think they are just going to proliferate & at some point you can't control the space/content/representation. The terms and conditions of these online spaces are widely variable. In some everything that's shared/written becomes the property of the sponsor who can edit, use, re-publish or use for publicity. There is no privacy, no ownership, no accountability. Though they seem like "safe spaces", many of them are filled with both spammers and porn folks. Also, many sites are searchable by google or other search engines. Cyberspace is notoriously hard to control, if control is a top priority of the organization. That too requires an investment to maintain. On the other hand, presidential candidates have gotten elected recently using these social networking tools successfully and raised $500 million online, largely from people giving $100 or less.

*'''''What happens if other Facebook Groups or Causes exist for the same condition as mine?'''''
:We as an organization (Cystinosis Research Network) started a Facebook cause (which was very straightforward to do) under the title "Cystinosis". We've raised a few hundred dollars and have had nearly 1,000 join the cause with almost no effort.

:We've recently run across another cause for cystinosis which was started by someone we aren't familiar with. Donations are going to the other advocacy group in the U.S., which is fine, except he used our logo, website address and vision and mission information. I've "facebooked" the cause administrator just to point out the inconsistency and the confusion it might provide for possible donors with no response back.

:Finally, one of our medical advisory board members decided to start a CRN Facebook cause herself, as she didn't find CRN when she searched (our fault, should have titled our cause "CRN" specifically, not the general "cystinosis"). Donations from her cause go to CRN, and frankly, she did a much nicer job than us in setting it up! We've decided that having the two sites is complimentary in the end.

:I guess my point is that Facebook is a fairly uncontrolled space, putting your organization as a cause can provide very easily collected modest donations and raise awareness, but there is always the possibility (as in many situations, I suppose, like blogs, etc.) where other individuals can use information from your organization without your knowledge, which may or may not lead to any significant misunderstandings or harm.

*'''''How does a group go about getting permission to use photos from conferences on social media websites and in enewsletters? Additionally, if photos are used on Facebook, how does 'liking', 'sharing', and 'tagging' interact with privacy violations?'''''

:*Team Sanfilippo has a Facebook page and a private MPS community page as well. We have put posts up on occasion asking permission and parents have responded in several ways. Some have said use whatever you see online of my child, others have sent us a few pictures and and some have said to take anything from their child's personal site we want. So we print those threads out in case of an issue down the road. We've never run into any issues so far.
:*We have a photo/video release at our conferences that we ask families to sign, which basically is a waiver for any electronic or print distribution. However, sometimes families just send us photos via email, etc., to be used in our newsletter and don’t necessarily provide a formal release. For many years before we had an electronic newsletter, the pictures were used in our print newsletter. However, we have now decided to implement a policy wherein we obtain a formal release for use of any photos submitted by any mechanisms. I do have to make the disclaimer that we try not to identify any minor by name in photos. We do have a FB page, and we have “turned off” the ability for anyone other than the administrator to upload photos and our policy is not to upload any photos organizationally of patients. We also have a private password protected online community which does allow the user to upload pictures to their personal page. The community use agreement contains a disclaimer to the effect that although the site is private and password protected, we are not responsible for and cannot protect against the potential use of the photos outside the online community (because a member copies it and uses it elsewhere).

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Blogging]]
*[[Building a Website]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[People and Roles]]
*[[Recruiting]]
**[[Publicity and General Media]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Taking Credit Cards on the Web]]

Social Networking

2018-07-30T20:52:18Z

Aguise: /* Recommended Links */

Social networking sites have seen a dramatic increase in popularity, leaving many advocacy organizations wondering the best way to engage with and integrate this technology into their organizations. Information on [http://www.facebook.com Facebook] is shared below, but feel free to help us expand and include information on other social networking sites, such as [http://www.myspace.com MySpace] and [http://www.twitter.com Twitter].

Social media can be a very useful tool for interacting with your community. Many organizations use social media (e.g. Twitter, Facebook and others) as a broadcast communication tool, updating their community and thepublic about progress or new developments with their registry or biobank. This is just the beginning. Social media can also be used strategically to listen to and engage with your community. [http://www.slideshare.net/Radian6/30-ideas-for-your-2012-social-media-plan Radian6] has created a wonderful resource, 30 ideas for your social media plan in 2012 that provides insight on how to use social media more effectively. Once your social media plan is in place, be sure to [http://blog.kissmetrics.com/science-of-social-timing-1 time your posts] for when your audience is most likely to be listening.

== Facebook ==
=== Where do I start? ===

Facebook has many different ways to be involved as an organization, such as Causes and Groups. It might be easiest to just start with your own personal profile so you understand what your constituents are seeing from the user side. "Friend them,"
watch their behavior, what attracts, what doesn't, join Cause Pages and Fan Pages of other non-profits and get their updates and announcements on Facebook and you'll pick it up. Or find a constituent/volunteer who's already "into it" and ask them to be a "virtual" volunteer leader of your Facebook presence to grow it organically. To learn more about Facebook pages, you can read [[Media:Facebook_Pages_Insider's_Guide.pdf|"The Insider's Guide."]]

The following is one organization's take on how to use Facebook:

Eleni Tsigas

Preeclampsia Foundation

"When you do a Facebook Ad, including Boosted Posts, you can run it to current fans or with an exception criteria that does not include your current Fans. That being said, I would hesitate to boost ANY post unless there was a specific drive/aim in us doing so. Boosting it just to get visibility with no call-to-action is not an effective use of money. Driving general Likes on the other hand, does serve us well and is worth the investment, though if you ever got to the point where you had exhausted potential clients, I would recommend that you take a break for some time.

In addition, Facebook (and social media in general) raises AWARENESS, not funds. Email marketing is much better suited for that purpose, and better yet, peer-to-peer requests. Facebook does, however, remind people of important things like "Oh, I should go register for a walk and start fundraising." People make the mistake of assuming it is a panacea instead of one more tool in the communication arsenal.”

*'''Causes''' 

Any Facebook users will be able to see all your NonProfit's Cause Pages in one place that looks like [https://apps.facebook.com/causes/ this]. But the NPO as an entity won't be able to manage relationships with these User-created Cause Pages without this approval from the Cause Application Company, Project Agape.

As an approved Partner, you'll be granted access to a different background ADMIN page that through a portal page that only organizations are be able to access. From there, you'll be able to "designate" which of all the Cause Pages out there is the "official" Cause Page of the organization from that ADMIN area. You can still need to create your own Cause page from the User side as a leader of the organization and then designate THAT one as the "official" Cause page. Or choose None as "official" and just receive donations as the chosen beneficiary of the multiple pages created to support your cause.

You'll also have options from your ADMIN area to "Manage Causes" and can "disassociate" any that you don't want to be associated with your Cause. You can also "Manage Donations," where you can see all your donors, download reports to add them to your donor database, have options for "thank them" using Facebook, etc. One point to be aware of: The official Causes Partner reports often list as Anonymous some contributions for which an individual donor is identified on the specific Cause page where the donation was made.(This depends on which box the donor checks at the time of the donation.) Unless you keep track of each associated Cause page, you will miss the opportunity to thank some donors who are identified on the individual Cause page but not on the Causes Partner reports. You can also administer Cause Petitions within your ADMIN area where you appeal for people to "sign" a collective petition advocating for some sort of change.

Then encourage any of your constituents who want to create their own Cause Page to do so and ALL of them can be set to "benefit" your 501(c)(3). Anyone can create a Cause page if they add the Cause application to their Facebook Profile. They can join lots of Causes and create multiple Cause pages for causes they care about. They "choose" who their Cause page will benefit from any nonprofit organization that is listed in [http://www.guidestar.org Guidestar database].

Then keep creating ways in your campaigns/appeals/advocacy alerts to give your constituents a way to viral your message to everyone on their Cause page with "canned" text/graphics/links back to page on your website and you've got a movement.
People always respond best to appeals made by people they know. Empower your constituents to be ambassadors of your messages. They get the experience of helping the cause they care about and have passion to share with others they know. You get people to reach more people with your appeals for the cause than you would ever reach in a top-down message delivery strategy.

More good information about Causes can be accessed from Facebook's [https://apps.facebook.com/causes/ Causes' FAQs] and [http://apps.facebook.com/causes/about?m=736620da here].

*'''Groups''' 

Facebook Group pages are very easy to create also, but are more like an open or closed online group meeting space. Doesn't
have near the tools for NPO communications and outreach and fundraising, but it has it functions. We have a group page for volunteers [http://www.facebook.com/groups.php?ref=sb#/group.php?gid=11572144041 here], but we haven't done a lot with it except let it grow and share "news" posts and links. It's still grown to over 600 in last year.

An idea for patient privacy is to open your group page only to those who have signed up as members of your Association.
Those who are NOT members, can be messaged as to their affiliation (I have a sister with this disease, my child has this disease…)
The message is sent by going to the inquirer's own FB page and clicking on SEND A MESSAGE.
It not only helps with patient privacy, but provides new members.

The only drawback to this system is if the person does not have the message ability
on their FB page when one goes to message them to ask their affiliation….

Also, there are sometimes patients who, for various reasons, start another FB page
on the same disease… these are usually not a big draw from the "official" disease page and
serve a purpose for their group. One can ask them to be a Friend, posting when
appropriate on these other pages, but not so often as to appear to be FB-stalking them.

* 10 Tips for Non-Profits on Facebook -
http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook

*'''Discussion following #deleteFacebook in 2018''' 

---"The HLRCC Family Alliance has wrestled with the use of the Facebook Group and other forums for some years.
We made the Facebook group secret which means that not only are posts private, but the member list is also. As it is not found by search people have to find it via the website and send an email to contact and receive an invitation to join. Or people can add family and Facebook friends.
We were finding nevertheless that there were limitations on long-term functionality with older posts being difficult to find if longer than a year or two old.
About three years ago an organisation called Smart Patients was started from a previous list forum called ACOR. It supports all medical conditions with a set of communities and we created one for HLRCC.The admin and IT support are second to none. We have encouraged the Facebook group to become members and about two thirds have 200 out of 300
The Facebook group continues but we have people in Smart Patients with no Facebook account so we have some cross communication issues."

---"I’m glad to see you mentioning Smart Patients. I recently joined Smart Patients because of a health condition with which I was diagnosed. From the patient perspective, it seems superbly run, though I know absolutely nothing about what happens behind the curtain. I recently heard something that stuck with me. It was on a NPR program about Facebook moving to a pay for service model. “If you’re not PAYING for the product, you ARE the product.” One concern I have about Smart Patients is that, like Facebook, it does share anonymized data with third parties without the consent of members: https://www.smartpatients.com/faq#what-is-smart-patients."

---"When I was in charge of social media for The XLH Network, Inc., I resisted creating a Facebook group, for all the reasons that are now being addressed -- concerns about privacy, even in a closed group; the lack of email addresses for our database (so we didn't "own" the membership -- Facebook did); and dividing up our community into a variety of platforms. I don't know for sure that it was the right decision, but at least it meant that the Network has always had an alternative to Facebook in place.

The Network started as a listserv, and then the membership transferred to a forum. Unfortunately, forums aren't as easy/convenient to use as Facebook (although they offer a lot of benefits, including being able to organize responses by topic, which makes them highly searchable, and you can collect a lot of advice on repeat topics over the years), so it's difficult to get engagement there. But at least the nonprofit retains ownership of the membership, which it doesn't have with any interactions on Facebook, .

Since we had a forum already, we didn't need a platform like SmartPatients or PatientsLikeMe.com, and creating accounts with them would have split our community even further (some at Facebook, some at the Network's forum and some at these other platforms). Personally, both of those options worry me in much the same way that Facebook does, since they're FOR-PROFIT entities, based on their dot-com URLs.

To some extent, in this day and age, it's necessary to split the community and offer a variety of platforms for discussion -- some people just won't use a forum and some just won't use Facebook, and so on. (We considered creating a Google group, but just didn't have the experienced personnel to monitor it, and all platforms need monitoring.) So the Network maintains a Facebook page, but encourages taking private discussion over at the forum.

Just to throw out another concern with Facebook -- a few months ago, some consultants started stalking our patient community on Facebook. I don't even know how they did it, because I wasn't able to duplicate their search results, but they were able to find out who on Facebook mentioned XLH in their PRIVATE timelines/profiles. The consultants then sent private messages to those people to ask them to participate in some research. At first, we thought they were scraping info from people who posted to the Network's page, which was bad enough, but it appeared to go beyond that, to people who had never posted to the page, but mentioned XLH in their private timelines. I still don't know how they did that, but it's worrisome."

---"Our Facebook group pre-dates the organization that I run. I am heavily invested in it, but it’s not under our organization. I think for now it will continue to be most appropriate for our condition. I see a lot of benefits to the FB platform for our patient families - the cross talk with groups for comorbidities and the ability to message and friend other families. I’ve learned a lot about other patients from what they post outside of the group, just seeing their everyday lives, that helps me as a caregiver and as an advocate. That is one thing that you would never get from a stand alone forum. That said, it’s pretty clear that Facebook doesn’t really care about group users and there are plenty of frustrating things about the features for groups.

I’ve set up Vanilla Forums for another organization:
https://vanillaforums.com/en/software/
We set up the self-hosted open source product, so it is free but has to be maintained. I think for most groups I’d recommend using their paid, hosted product though. It’s not cheap. I wonder if they may have some flexible pricing for non-profits though.

The Chordoma Foundation launched a community recently on this platform
https://personifycorp.com/small-world-community/
I’ve been curious about that but don’t know anymore than what they have publicized about it.

I signed up for SmartPatients to check it out and registered for a group (or tag in SP) for a brain condition relevant to our syndrome. I found it mildly glitchy (not terrible, but not thrilling either) and the group had seen very light use. I found that via tags in posts, I could access other conditions that I’m not sure I was supposed to be able to access. I think it could have potential, but it seemed like it may have lost momentum to me.

I think this is an interesting conversation, I’d love to see better platforms for our groups flower. But for us there’s not a strong need yet I think."

---"We have been struggling with this as well for several years now. The largest and most active private FB group for our patient community was started by a group of patients and is not administrated by us or any organization. From the very beginning I have been struggling to figure out community forum options because I never felt comfortable with a private FB group for all the reasons already stated here. So we did start a Smart patient community, but it hasn’t gotten the traction we had hoped.

We have discussed this often with the Genetic Alliance to see if there was a solution as part of the PEER platform. Since it is non profit and already has some strong privacy built into it, perhaps if enough of the groups on the PEER platform are interested it is something we could pursue.

Our other thought is to see if building out a private community forum from our CMS vendor is an option, so that we do have ownership of the members and can put privacy assurances into place. Has anyone gone this route?"

== SmartPatients ==

"About three years ago an organisation called Smart Patients was started from a previous list forum called ACOR. It supports all medical conditions with a set of communities and we created one for HLRCC.The admin and IT support are second to none. We have encouraged the Facebook group to become members and about two thirds have 200 out of 300 The Facebook group continues but we have people in Smart Patients with no Facebook account so we have some cross communication issues."

"I signed up for SmartPatients to check it out and registered for a group (or tag in SP) for a brain condition relevant to our syndrome. I found it mildly glitchy (not terrible, but not thrilling either) and the group had seen very light use. I found that via tags in posts, I could access other conditions that I’m not sure I was supposed to be able to access. I think it could have potential, but it seemed like it may have lost momentum to me."

"SmartPatients has the concept that all conversations of all communities are accessible instead of having a separate silo for each condition. People can be members of several communities and can follow tags that they are interested in. This means that for example information about a particular drug side effect can be found across conditions. It is very open to any suggestion for improvement via a Site Feedback tag. You will always get a personal reply."

==Twitter==

===Introduction===
Twitter is a social networking site that begins with the question, "What are you doing?" Twitter is much more streamlined than facebook; user profiles are limited to name, location and a 140 character bio. Twitter status updates or "tweets" are also limited to 140 characters. They can include links to outside sites but cannot included embedded photos, video or other content. Twitter users can upload a profile picture and [http://mashable.com/2009/05/23/twitter-backgrounds/ create a customized background] for their page but cannot make further customizations.

===Terminology===
'''Tweet''': A message/status update on Twitter of 140 characters or less.
 '''@''': Putting the @ sign before a twitter username (i.e. @geneticalliance) will create a link to that person's Twitter page within your tweet
 '''RT''' or '''Re-tweet''': When a user re-broadcasts a tweet written by someone else. These posts usually begin with "RT @twitteruser:" to give credit to the person who wrote the original tweet.
 '''Hashtag''' or '''#''': This is a way of denoting a keyword of conversation topic. The word after the hashtag is clickable and will bring you to a display of every other Tweet which contains the same hashtag. These can be used to create a meta-dialogue or to track the conversation about a certain topic. Sometimes groups will schedule chats on Twitter, which are identified by a specific hashtag. Users can join in the chat just by clicking on the hashtag or by using a third-party site such as [http://www.tweetchat.com Tweet Chat].

===Twitter Clients===
A Twitter client can often provide more features and functionality than the main website. Although your content still appears on Twitter, and is still subject to the same limitations, a small line underneath your post will let others know what client you are using; i.e. "via TweetDeck." Some clients allow you to manage more than one Twitter account from the same place, and many will also let you update Facebook, LinkedIn and other social media sites simultaneously. Some also allow you to schedule your tweets to post at a later time.

Here are some popular Twitter clients:
*[http://www.hootsuite.com Hoot Suite]
*[http://www.tweetdeck.com Tweet Deck]
*[http://www.tweetmeme.com Tweet Meme]

===Best Practices===
'''Follow people who follow you''' - If someone follows you, it is considered courteous to follow them back. If you are concerned that following too many people will clog up your Twitter stream, create a list of those most important to you so you don't miss out on anything they are saying.
 '''Re-tweet''' - It's that simple. If someone says something funny, interesting or thought-provoking, share it with your network. It's a great way to get them to notice you and maybe remember you the next time you want your own content re-tweeted. Always make sure to start a re-tweet with "RT @username:" Twitter doesn't do this automatically when you click the re-tweet button; if you just click the button, your RT won't show up in their @ feed, so you won't get credit for helping out!
 '''Get involved in the dialogue''' - Twitter is not a place for wallflowers. It's also not a place to constantly promote yourself or your brand. There is a place for that, but self-promotion should make up less than 10% of your tweets, on average. If you participate in the conversation and post content that is valuable to your followers, you will form lasting relationships which can translate to valuable partnerships on the web and in the real world.

==Discussion Forums==
===Teen Discussion Forum===
Teen discussion forums are online discussion sites for teenagers to share their stories and experiences with one another. People participating in the forum may cultivate social bonds and interest groups from a topic made from the discussions. Since participating teenagers will most likely be underage, it will require a different set of development and maintenance methods than the ones used for a regular discussion forum. Here are several issues to consider:

'''Who would be the administrator for such a site?

An administrator is necessary for two reasons:
*Kids might end up inadvertently submitting incorrect medical information that could then go viral
*There is the risk of improper posts (sexual, harassing, flaming content…)

'''Should a Listserv or a chat area be offered?

Again, both would require supervision and the time and effort of a staff member.

'''What other issues do I need to look out for?

There is a great deal of liability involved when dealing with any activity including minors. Some cyber insurance would not cover such an undertaking – at least not without resistance and a costly rider.

==How do I keep up?==

Tips provided by Jim Moore

'''Facebook'''

I did several things to keep track of FB activity—this is my plan. If it doesn’t work for you, please ignore it:

# Regular searches for new groups and pages. Use the same search engine word strings you’d use on Google and mix them up. You will find them.
# Join the groups...and be forthright about who you are.
##If the groups refuse to admit you, infiltrate with another volunteer who is “just a parent.” Don’t use official organization reps for this. Just pick a “friend” you trust who’s not on the board or a committee, etc. and have them join.
# Turn on “notifications” for each group. Turn on “email” in your notifications settings. Select ALL posts to the group for notifications.
## Prepare for a deluge of email notifications.
##Note that threads have “subject” lines, so if a thread does not pertain, sort by subject and delete the whole lot of ‘em.
#Skim ALL subject matter looking for “opportunities.” (Prioritize to those message threads where real expertise is required.) I define opportunity as:
##Newbie looking for solid info;
##Misinformation;
##“I dunnos”
##And so on.
##Above all, wait for “critical mass” to build in the message thread. If you respond to the initial post, only the questioner will see it. Wait until 15 or 20 people have chimed in and then drop it on ‘em. Thread participants will ALL get a notification of another post to the thread, and they’ll all benefit...and from an organizational marketing point of view, they will all see your organization in action at its best. (obvious exception would be for a critical item where time is of the essence...e.g. prenatal diagnosis or life-threatening situation or “the meeting at the school is tomorrow!”)
#Generate boilerplate. Nothing is more time-consuming than writing the same thing over and over again, and freelancing every response introduces the opportunity for mistakes and omissions.
## Remember: there are really only 10 to 20 questions – asked over and over again – perhaps many permutations, but the right guidance is still the right guidance.
##Create a library of boilerplate by subject.
##Save them in MS Word or similar so you can just open the file, copy and paste.
##Embed links to info on your website prolifically. Drag them to your organization, and use the boilerplate as a preamble to say “find this here and find that there.”
###My philosophy is to never simply hand it to them. Instead, act like a library and have them come and get it. This way, they learn about the library, and they know to come to the library next time they have a question.
##Disclose that it’s boilerplate with a custom intro such as, “[Name], We have guidance on this subject. This is a far more comprehensive response that your answer may require, but you may find it helpful. You may wish to save this for future reference. [insert boilerplate]. At the end of each boilerplate response, remind the reader that it’s boilerplate and point them to where they can find more info.
##Name the files “boilerplate-[subject}” so you can find them using Windows Explorer search tools.
##Keep the boilerplate up-to-date. This is more work than it might seem, because most boilerplate ends up littered with hyperlinks to docs on your site and elsewhere, and much of the baseline guidance needs regular review.
##Don’t be afraid to be comprehensive. I always got rave reviews on the boilerplate and many “secondary” thank-yous from other readers in the thread.
#Be strategic. Don’t “helicopter.” Respect the group and just “show up big time” when it really counts.
#ASK PERMISSION: before posting things like events, research recruitment, fundraising and so on. Most will be accommodating, but if they say “no fundraising” or “just the specific variation we serve”, it’s their group.
#DEBATE: inevitably you’ll encounter some preposterous nonsense or another that can’t be ignored. Debate vigorously but respectfully, and then TRUST THE AUDIENCE to know the difference between nonsense and solid info. Your debate “opponent” will never admit being wrong or admit “defeat,” so that’s not a goal. Make your points well and respectfully, then walk away. (easier said than done sometimes, and this is NOT my forte’) J.

You just read all that. I don’t have to tell you that it’s tons of work. But so is a conference, creating a website, publishing booklets and so on. This is currently where the people are (social media), and you need to go to where the people are and meet them on their turf.

Get help. If you have several volunteers you truly trust, give them your login. Yes, let them impersonate you....within strict guidelines. This is the beauty of boilerplate. The words are tried and true...vetted. Your surrogates are just that...clones who have strict marching orders. And because they are using “your” accounts and memberships, you can see everything they do as they do it. Supervise and train. It will pay off quickly and give you time to focus on other things while still having a huge (or in today’s political vernacular Yuuuuge!) social media presence.

'''Twitter'''

Twitter is even bigger than this, and it involves lots of one-on-one engagement to build followers and pay your dues with those followers. Suffice it to say that Twitter is all about mutual back scratching. I’ll reserve that for another time.

'''Use Multiple Social Media Profiles'''

If you are using your personal profile, the one with photos of your cat and thoughts on the upcoming election, stop. You’re bound to alienate lots of people with your “other” posts.

Your organization profile should be utterly bland on every front other than the organization’s mission.

Create a new, organization-specific profile and use it exclusively for the organization’s messages. Then create a second profile in case Facebook gives you a “time out” for misbehavior of some sort. (too many friend requests, too many duplicate posts to too many groups, etc.) I have two professional profiles:
#First Name Last Name
#First Name Executive Director
They are otherwise identical in virtually every way, so readers really can’t tell one from the other.

Using these methods, I was able to actively participate in approximately 25 Facebook groups worldwide (including 4 condition-specific groups where I was admin), multiple Facebook pages, and 3 Twitter feeds with thousands of followers.
I used “push” tools in Constant Contact to push content to the pages and Twitter, and then I relayed that content to “friendly” groups worldwide. All of that content was very easy to distribute, and the degree to which it was welcomed was directly related to the relationships developed with the other independent groups’ admins.

==Recommended Links==

*[http://www.casefoundation.org/social-media-tutorials The Case Foundation's Social Media Tutorials]
*[http://www.cdc.gov/healthcommunication/ToolsTemplates/SocialMediaToolkit_BM.pdf?s_cid=tw_eh_135 CDC's Health Communicator's Social Media Toolkit]
*[http://www.youtube.com/t/ngo_tips YouTube Tips for NGOs]
*[http://ow.ly/35h1M Social Media: Tips and Tricks.]
*[http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook/ 10 Tips for Non-Profits on Facebook]
*[http://www.blogtips.org/upcoming-online-media-workshop-and-webinar-for-nonprofits/ Blog Tips for Non-Profits]

If you would like to see examples of social media pages, visit Genetic Alliance's pages:

*[http://www.facebook.com/group.php?gid=15453400385&ref=ts http://www.facebook.com/group.php?gid=15453400385&ref=ts]

*[http://www.linkedin.com/companies/genetic-alliance http://www.linkedin.com/companies/genetic-alliance]

*[http://twitter.com/geneticalliance http://twitter.com/geneticalliance]

*[http://www.youtube.com/geneticalliance http://www.youtube.com/geneticalliance]

== Questions and Answers ==

*'''''How has your organization responded to requests from families who want to start a group on Facebook? Is it better to start one as an organization in order to keep control?'''''
** We did start our own Facebook Group and Cause so that we would have some control. We have raised a couple hundred dollars on the site (with literally no work).
**We have a Facebook Causes page and our members have their own Facebook pages. Then they can join our Facebook cause and leave comments and such on the cause page and information on their own pages.
**I think there are several issues to think about here. One is whether you can show up on every blog, online group, MySpace or Facebook venue. I think they are just going to proliferate & at some point you can't control the space/content/representation. The terms and conditions of these online spaces are widely variable. In some everything that's shared/written becomes the property of the sponsor who can edit, use, re-publish or use for publicity. There is no privacy, no ownership, no accountability. Though they seem like "safe spaces", many of them are filled with both spammers and porn folks. Also, many sites are searchable by google or other search engines. Cyberspace is notoriously hard to control, if control is a top priority of the organization. That too requires an investment to maintain. On the other hand, presidential candidates have gotten elected recently using these social networking tools successfully and raised $500 million online, largely from people giving $100 or less.

*'''''What happens if other Facebook Groups or Causes exist for the same condition as mine?'''''
:We as an organization (Cystinosis Research Network) started a Facebook cause (which was very straightforward to do) under the title "Cystinosis". We've raised a few hundred dollars and have had nearly 1,000 join the cause with almost no effort.

:We've recently run across another cause for cystinosis which was started by someone we aren't familiar with. Donations are going to the other advocacy group in the U.S., which is fine, except he used our logo, website address and vision and mission information. I've "facebooked" the cause administrator just to point out the inconsistency and the confusion it might provide for possible donors with no response back.

:Finally, one of our medical advisory board members decided to start a CRN Facebook cause herself, as she didn't find CRN when she searched (our fault, should have titled our cause "CRN" specifically, not the general "cystinosis"). Donations from her cause go to CRN, and frankly, she did a much nicer job than us in setting it up! We've decided that having the two sites is complimentary in the end.

:I guess my point is that Facebook is a fairly uncontrolled space, putting your organization as a cause can provide very easily collected modest donations and raise awareness, but there is always the possibility (as in many situations, I suppose, like blogs, etc.) where other individuals can use information from your organization without your knowledge, which may or may not lead to any significant misunderstandings or harm.

*'''''How does a group go about getting permission to use photos from conferences on social media websites and in enewsletters? Additionally, if photos are used on Facebook, how does 'liking', 'sharing', and 'tagging' interact with privacy violations?'''''

:*Team Sanfilippo has a Facebook page and a private MPS community page as well. We have put posts up on occasion asking permission and parents have responded in several ways. Some have said use whatever you see online of my child, others have sent us a few pictures and and some have said to take anything from their child's personal site we want. So we print those threads out in case of an issue down the road. We've never run into any issues so far.
:*We have a photo/video release at our conferences that we ask families to sign, which basically is a waiver for any electronic or print distribution. However, sometimes families just send us photos via email, etc., to be used in our newsletter and don’t necessarily provide a formal release. For many years before we had an electronic newsletter, the pictures were used in our print newsletter. However, we have now decided to implement a policy wherein we obtain a formal release for use of any photos submitted by any mechanisms. I do have to make the disclaimer that we try not to identify any minor by name in photos. We do have a FB page, and we have “turned off” the ability for anyone other than the administrator to upload photos and our policy is not to upload any photos organizationally of patients. We also have a private password protected online community which does allow the user to upload pictures to their personal page. The community use agreement contains a disclaimer to the effect that although the site is private and password protected, we are not responsible for and cannot protect against the potential use of the photos outside the online community (because a member copies it and uses it elsewhere).

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Blogging]]
*[[Building a Website]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[People and Roles]]
*[[Recruiting]]
**[[Publicity and General Media]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Taking Credit Cards on the Web]]

Social Networking

2018-07-30T20:50:37Z

Aguise: /* How do I keep up? */

Social networking sites have seen a dramatic increase in popularity, leaving many advocacy organizations wondering the best way to engage with and integrate this technology into their organizations. Information on [http://www.facebook.com Facebook] is shared below, but feel free to help us expand and include information on other social networking sites, such as [http://www.myspace.com MySpace] and [http://www.twitter.com Twitter].

Social media can be a very useful tool for interacting with your community. Many organizations use social media (e.g. Twitter, Facebook and others) as a broadcast communication tool, updating their community and thepublic about progress or new developments with their registry or biobank. This is just the beginning. Social media can also be used strategically to listen to and engage with your community. [http://www.slideshare.net/Radian6/30-ideas-for-your-2012-social-media-plan Radian6] has created a wonderful resource, 30 ideas for your social media plan in 2012 that provides insight on how to use social media more effectively. Once your social media plan is in place, be sure to [http://blog.kissmetrics.com/science-of-social-timing-1 time your posts] for when your audience is most likely to be listening.

== Facebook ==
=== Where do I start? ===

Facebook has many different ways to be involved as an organization, such as Causes and Groups. It might be easiest to just start with your own personal profile so you understand what your constituents are seeing from the user side. "Friend them,"
watch their behavior, what attracts, what doesn't, join Cause Pages and Fan Pages of other non-profits and get their updates and announcements on Facebook and you'll pick it up. Or find a constituent/volunteer who's already "into it" and ask them to be a "virtual" volunteer leader of your Facebook presence to grow it organically. To learn more about Facebook pages, you can read [[Media:Facebook_Pages_Insider's_Guide.pdf|"The Insider's Guide."]]

The following is one organization's take on how to use Facebook:

Eleni Tsigas

Preeclampsia Foundation

"When you do a Facebook Ad, including Boosted Posts, you can run it to current fans or with an exception criteria that does not include your current Fans. That being said, I would hesitate to boost ANY post unless there was a specific drive/aim in us doing so. Boosting it just to get visibility with no call-to-action is not an effective use of money. Driving general Likes on the other hand, does serve us well and is worth the investment, though if you ever got to the point where you had exhausted potential clients, I would recommend that you take a break for some time.

In addition, Facebook (and social media in general) raises AWARENESS, not funds. Email marketing is much better suited for that purpose, and better yet, peer-to-peer requests. Facebook does, however, remind people of important things like "Oh, I should go register for a walk and start fundraising." People make the mistake of assuming it is a panacea instead of one more tool in the communication arsenal.”

*'''Causes''' 

Any Facebook users will be able to see all your NonProfit's Cause Pages in one place that looks like [https://apps.facebook.com/causes/ this]. But the NPO as an entity won't be able to manage relationships with these User-created Cause Pages without this approval from the Cause Application Company, Project Agape.

As an approved Partner, you'll be granted access to a different background ADMIN page that through a portal page that only organizations are be able to access. From there, you'll be able to "designate" which of all the Cause Pages out there is the "official" Cause Page of the organization from that ADMIN area. You can still need to create your own Cause page from the User side as a leader of the organization and then designate THAT one as the "official" Cause page. Or choose None as "official" and just receive donations as the chosen beneficiary of the multiple pages created to support your cause.

You'll also have options from your ADMIN area to "Manage Causes" and can "disassociate" any that you don't want to be associated with your Cause. You can also "Manage Donations," where you can see all your donors, download reports to add them to your donor database, have options for "thank them" using Facebook, etc. One point to be aware of: The official Causes Partner reports often list as Anonymous some contributions for which an individual donor is identified on the specific Cause page where the donation was made.(This depends on which box the donor checks at the time of the donation.) Unless you keep track of each associated Cause page, you will miss the opportunity to thank some donors who are identified on the individual Cause page but not on the Causes Partner reports. You can also administer Cause Petitions within your ADMIN area where you appeal for people to "sign" a collective petition advocating for some sort of change.

Then encourage any of your constituents who want to create their own Cause Page to do so and ALL of them can be set to "benefit" your 501(c)(3). Anyone can create a Cause page if they add the Cause application to their Facebook Profile. They can join lots of Causes and create multiple Cause pages for causes they care about. They "choose" who their Cause page will benefit from any nonprofit organization that is listed in [http://www.guidestar.org Guidestar database].

Then keep creating ways in your campaigns/appeals/advocacy alerts to give your constituents a way to viral your message to everyone on their Cause page with "canned" text/graphics/links back to page on your website and you've got a movement.
People always respond best to appeals made by people they know. Empower your constituents to be ambassadors of your messages. They get the experience of helping the cause they care about and have passion to share with others they know. You get people to reach more people with your appeals for the cause than you would ever reach in a top-down message delivery strategy.

More good information about Causes can be accessed from Facebook's [https://apps.facebook.com/causes/ Causes' FAQs] and [http://apps.facebook.com/causes/about?m=736620da here].

*'''Groups''' 

Facebook Group pages are very easy to create also, but are more like an open or closed online group meeting space. Doesn't
have near the tools for NPO communications and outreach and fundraising, but it has it functions. We have a group page for volunteers [http://www.facebook.com/groups.php?ref=sb#/group.php?gid=11572144041 here], but we haven't done a lot with it except let it grow and share "news" posts and links. It's still grown to over 600 in last year.

An idea for patient privacy is to open your group page only to those who have signed up as members of your Association.
Those who are NOT members, can be messaged as to their affiliation (I have a sister with this disease, my child has this disease…)
The message is sent by going to the inquirer's own FB page and clicking on SEND A MESSAGE.
It not only helps with patient privacy, but provides new members.

The only drawback to this system is if the person does not have the message ability
on their FB page when one goes to message them to ask their affiliation….

Also, there are sometimes patients who, for various reasons, start another FB page
on the same disease… these are usually not a big draw from the "official" disease page and
serve a purpose for their group. One can ask them to be a Friend, posting when
appropriate on these other pages, but not so often as to appear to be FB-stalking them.

* 10 Tips for Non-Profits on Facebook -
http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook

*'''Discussion following #deleteFacebook in 2018''' 

---"The HLRCC Family Alliance has wrestled with the use of the Facebook Group and other forums for some years.
We made the Facebook group secret which means that not only are posts private, but the member list is also. As it is not found by search people have to find it via the website and send an email to contact and receive an invitation to join. Or people can add family and Facebook friends.
We were finding nevertheless that there were limitations on long-term functionality with older posts being difficult to find if longer than a year or two old.
About three years ago an organisation called Smart Patients was started from a previous list forum called ACOR. It supports all medical conditions with a set of communities and we created one for HLRCC.The admin and IT support are second to none. We have encouraged the Facebook group to become members and about two thirds have 200 out of 300
The Facebook group continues but we have people in Smart Patients with no Facebook account so we have some cross communication issues."

---"I’m glad to see you mentioning Smart Patients. I recently joined Smart Patients because of a health condition with which I was diagnosed. From the patient perspective, it seems superbly run, though I know absolutely nothing about what happens behind the curtain. I recently heard something that stuck with me. It was on a NPR program about Facebook moving to a pay for service model. “If you’re not PAYING for the product, you ARE the product.” One concern I have about Smart Patients is that, like Facebook, it does share anonymized data with third parties without the consent of members: https://www.smartpatients.com/faq#what-is-smart-patients."

---"When I was in charge of social media for The XLH Network, Inc., I resisted creating a Facebook group, for all the reasons that are now being addressed -- concerns about privacy, even in a closed group; the lack of email addresses for our database (so we didn't "own" the membership -- Facebook did); and dividing up our community into a variety of platforms. I don't know for sure that it was the right decision, but at least it meant that the Network has always had an alternative to Facebook in place.

The Network started as a listserv, and then the membership transferred to a forum. Unfortunately, forums aren't as easy/convenient to use as Facebook (although they offer a lot of benefits, including being able to organize responses by topic, which makes them highly searchable, and you can collect a lot of advice on repeat topics over the years), so it's difficult to get engagement there. But at least the nonprofit retains ownership of the membership, which it doesn't have with any interactions on Facebook, .

Since we had a forum already, we didn't need a platform like SmartPatients or PatientsLikeMe.com, and creating accounts with them would have split our community even further (some at Facebook, some at the Network's forum and some at these other platforms). Personally, both of those options worry me in much the same way that Facebook does, since they're FOR-PROFIT entities, based on their dot-com URLs.

To some extent, in this day and age, it's necessary to split the community and offer a variety of platforms for discussion -- some people just won't use a forum and some just won't use Facebook, and so on. (We considered creating a Google group, but just didn't have the experienced personnel to monitor it, and all platforms need monitoring.) So the Network maintains a Facebook page, but encourages taking private discussion over at the forum.

Just to throw out another concern with Facebook -- a few months ago, some consultants started stalking our patient community on Facebook. I don't even know how they did it, because I wasn't able to duplicate their search results, but they were able to find out who on Facebook mentioned XLH in their PRIVATE timelines/profiles. The consultants then sent private messages to those people to ask them to participate in some research. At first, we thought they were scraping info from people who posted to the Network's page, which was bad enough, but it appeared to go beyond that, to people who had never posted to the page, but mentioned XLH in their private timelines. I still don't know how they did that, but it's worrisome."

---"Our Facebook group pre-dates the organization that I run. I am heavily invested in it, but it’s not under our organization. I think for now it will continue to be most appropriate for our condition. I see a lot of benefits to the FB platform for our patient families - the cross talk with groups for comorbidities and the ability to message and friend other families. I’ve learned a lot about other patients from what they post outside of the group, just seeing their everyday lives, that helps me as a caregiver and as an advocate. That is one thing that you would never get from a stand alone forum. That said, it’s pretty clear that Facebook doesn’t really care about group users and there are plenty of frustrating things about the features for groups.

I’ve set up Vanilla Forums for another organization:
https://vanillaforums.com/en/software/
We set up the self-hosted open source product, so it is free but has to be maintained. I think for most groups I’d recommend using their paid, hosted product though. It’s not cheap. I wonder if they may have some flexible pricing for non-profits though.

The Chordoma Foundation launched a community recently on this platform
https://personifycorp.com/small-world-community/
I’ve been curious about that but don’t know anymore than what they have publicized about it.

I signed up for SmartPatients to check it out and registered for a group (or tag in SP) for a brain condition relevant to our syndrome. I found it mildly glitchy (not terrible, but not thrilling either) and the group had seen very light use. I found that via tags in posts, I could access other conditions that I’m not sure I was supposed to be able to access. I think it could have potential, but it seemed like it may have lost momentum to me.

I think this is an interesting conversation, I’d love to see better platforms for our groups flower. But for us there’s not a strong need yet I think."

---"We have been struggling with this as well for several years now. The largest and most active private FB group for our patient community was started by a group of patients and is not administrated by us or any organization. From the very beginning I have been struggling to figure out community forum options because I never felt comfortable with a private FB group for all the reasons already stated here. So we did start a Smart patient community, but it hasn’t gotten the traction we had hoped.

We have discussed this often with the Genetic Alliance to see if there was a solution as part of the PEER platform. Since it is non profit and already has some strong privacy built into it, perhaps if enough of the groups on the PEER platform are interested it is something we could pursue.

Our other thought is to see if building out a private community forum from our CMS vendor is an option, so that we do have ownership of the members and can put privacy assurances into place. Has anyone gone this route?"

== SmartPatients ==

"About three years ago an organisation called Smart Patients was started from a previous list forum called ACOR. It supports all medical conditions with a set of communities and we created one for HLRCC.The admin and IT support are second to none. We have encouraged the Facebook group to become members and about two thirds have 200 out of 300 The Facebook group continues but we have people in Smart Patients with no Facebook account so we have some cross communication issues."

"I signed up for SmartPatients to check it out and registered for a group (or tag in SP) for a brain condition relevant to our syndrome. I found it mildly glitchy (not terrible, but not thrilling either) and the group had seen very light use. I found that via tags in posts, I could access other conditions that I’m not sure I was supposed to be able to access. I think it could have potential, but it seemed like it may have lost momentum to me."

"SmartPatients has the concept that all conversations of all communities are accessible instead of having a separate silo for each condition. People can be members of several communities and can follow tags that they are interested in. This means that for example information about a particular drug side effect can be found across conditions. It is very open to any suggestion for improvement via a Site Feedback tag. You will always get a personal reply."

==Twitter==

===Introduction===
Twitter is a social networking site that begins with the question, "What are you doing?" Twitter is much more streamlined than facebook; user profiles are limited to name, location and a 140 character bio. Twitter status updates or "tweets" are also limited to 140 characters. They can include links to outside sites but cannot included embedded photos, video or other content. Twitter users can upload a profile picture and [http://mashable.com/2009/05/23/twitter-backgrounds/ create a customized background] for their page but cannot make further customizations.

===Terminology===
'''Tweet''': A message/status update on Twitter of 140 characters or less.
 '''@''': Putting the @ sign before a twitter username (i.e. @geneticalliance) will create a link to that person's Twitter page within your tweet
 '''RT''' or '''Re-tweet''': When a user re-broadcasts a tweet written by someone else. These posts usually begin with "RT @twitteruser:" to give credit to the person who wrote the original tweet.
 '''Hashtag''' or '''#''': This is a way of denoting a keyword of conversation topic. The word after the hashtag is clickable and will bring you to a display of every other Tweet which contains the same hashtag. These can be used to create a meta-dialogue or to track the conversation about a certain topic. Sometimes groups will schedule chats on Twitter, which are identified by a specific hashtag. Users can join in the chat just by clicking on the hashtag or by using a third-party site such as [http://www.tweetchat.com Tweet Chat].

===Twitter Clients===
A Twitter client can often provide more features and functionality than the main website. Although your content still appears on Twitter, and is still subject to the same limitations, a small line underneath your post will let others know what client you are using; i.e. "via TweetDeck." Some clients allow you to manage more than one Twitter account from the same place, and many will also let you update Facebook, LinkedIn and other social media sites simultaneously. Some also allow you to schedule your tweets to post at a later time.

Here are some popular Twitter clients:
*[http://www.hootsuite.com Hoot Suite]
*[http://www.tweetdeck.com Tweet Deck]
*[http://www.tweetmeme.com Tweet Meme]

===Best Practices===
'''Follow people who follow you''' - If someone follows you, it is considered courteous to follow them back. If you are concerned that following too many people will clog up your Twitter stream, create a list of those most important to you so you don't miss out on anything they are saying.
 '''Re-tweet''' - It's that simple. If someone says something funny, interesting or thought-provoking, share it with your network. It's a great way to get them to notice you and maybe remember you the next time you want your own content re-tweeted. Always make sure to start a re-tweet with "RT @username:" Twitter doesn't do this automatically when you click the re-tweet button; if you just click the button, your RT won't show up in their @ feed, so you won't get credit for helping out!
 '''Get involved in the dialogue''' - Twitter is not a place for wallflowers. It's also not a place to constantly promote yourself or your brand. There is a place for that, but self-promotion should make up less than 10% of your tweets, on average. If you participate in the conversation and post content that is valuable to your followers, you will form lasting relationships which can translate to valuable partnerships on the web and in the real world.

==Discussion Forums==
===Teen Discussion Forum===
Teen discussion forums are online discussion sites for teenagers to share their stories and experiences with one another. People participating in the forum may cultivate social bonds and interest groups from a topic made from the discussions. Since participating teenagers will most likely be underage, it will require a different set of development and maintenance methods than the ones used for a regular discussion forum. Here are several issues to consider:

'''Who would be the administrator for such a site?

An administrator is necessary for two reasons:
*Kids might end up inadvertently submitting incorrect medical information that could then go viral
*There is the risk of improper posts (sexual, harassing, flaming content…)

'''Should a Listserv or a chat area be offered?

Again, both would require supervision and the time and effort of a staff member.

'''What other issues do I need to look out for?

There is a great deal of liability involved when dealing with any activity including minors. Some cyber insurance would not cover such an undertaking – at least not without resistance and a costly rider.

==How do I keep up?==

Tips provided by Jim Moore

'''Facebook'''

I did several things to keep track of FB activity—this is my plan. If it doesn’t work for you, please ignore it:

# Regular searches for new groups and pages. Use the same search engine word strings you’d use on Google and mix them up. You will find them.
# Join the groups...and be forthright about who you are.
##If the groups refuse to admit you, infiltrate with another volunteer who is “just a parent.” Don’t use official organization reps for this. Just pick a “friend” you trust who’s not on the board or a committee, etc. and have them join.
# Turn on “notifications” for each group. Turn on “email” in your notifications settings. Select ALL posts to the group for notifications.
## Prepare for a deluge of email notifications.
##Note that threads have “subject” lines, so if a thread does not pertain, sort by subject and delete the whole lot of ‘em.
#Skim ALL subject matter looking for “opportunities.” (Prioritize to those message threads where real expertise is required.) I define opportunity as:
##Newbie looking for solid info;
##Misinformation;
##“I dunnos”
##And so on.
##Above all, wait for “critical mass” to build in the message thread. If you respond to the initial post, only the questioner will see it. Wait until 15 or 20 people have chimed in and then drop it on ‘em. Thread participants will ALL get a notification of another post to the thread, and they’ll all benefit...and from an organizational marketing point of view, they will all see your organization in action at its best. (obvious exception would be for a critical item where time is of the essence...e.g. prenatal diagnosis or life-threatening situation or “the meeting at the school is tomorrow!”)
#Generate boilerplate. Nothing is more time-consuming than writing the same thing over and over again, and freelancing every response introduces the opportunity for mistakes and omissions.
## Remember: there are really only 10 to 20 questions – asked over and over again – perhaps many permutations, but the right guidance is still the right guidance.
##Create a library of boilerplate by subject.
##Save them in MS Word or similar so you can just open the file, copy and paste.
##Embed links to info on your website prolifically. Drag them to your organization, and use the boilerplate as a preamble to say “find this here and find that there.”
###My philosophy is to never simply hand it to them. Instead, act like a library and have them come and get it. This way, they learn about the library, and they know to come to the library next time they have a question.
##Disclose that it’s boilerplate with a custom intro such as, “[Name], We have guidance on this subject. This is a far more comprehensive response that your answer may require, but you may find it helpful. You may wish to save this for future reference. [insert boilerplate]. At the end of each boilerplate response, remind the reader that it’s boilerplate and point them to where they can find more info.
##Name the files “boilerplate-[subject}” so you can find them using Windows Explorer search tools.
##Keep the boilerplate up-to-date. This is more work than it might seem, because most boilerplate ends up littered with hyperlinks to docs on your site and elsewhere, and much of the baseline guidance needs regular review.
##Don’t be afraid to be comprehensive. I always got rave reviews on the boilerplate and many “secondary” thank-yous from other readers in the thread.
#Be strategic. Don’t “helicopter.” Respect the group and just “show up big time” when it really counts.
#ASK PERMISSION: before posting things like events, research recruitment, fundraising and so on. Most will be accommodating, but if they say “no fundraising” or “just the specific variation we serve”, it’s their group.
#DEBATE: inevitably you’ll encounter some preposterous nonsense or another that can’t be ignored. Debate vigorously but respectfully, and then TRUST THE AUDIENCE to know the difference between nonsense and solid info. Your debate “opponent” will never admit being wrong or admit “defeat,” so that’s not a goal. Make your points well and respectfully, then walk away. (easier said than done sometimes, and this is NOT my forte’) J.

You just read all that. I don’t have to tell you that it’s tons of work. But so is a conference, creating a website, publishing booklets and so on. This is currently where the people are (social media), and you need to go to where the people are and meet them on their turf.

Get help. If you have several volunteers you truly trust, give them your login. Yes, let them impersonate you....within strict guidelines. This is the beauty of boilerplate. The words are tried and true...vetted. Your surrogates are just that...clones who have strict marching orders. And because they are using “your” accounts and memberships, you can see everything they do as they do it. Supervise and train. It will pay off quickly and give you time to focus on other things while still having a huge (or in today’s political vernacular Yuuuuge!) social media presence.

'''Twitter'''

Twitter is even bigger than this, and it involves lots of one-on-one engagement to build followers and pay your dues with those followers. Suffice it to say that Twitter is all about mutual back scratching. I’ll reserve that for another time.

'''Use Multiple Social Media Profiles'''

If you are using your personal profile, the one with photos of your cat and thoughts on the upcoming election, stop. You’re bound to alienate lots of people with your “other” posts.

Your organization profile should be utterly bland on every front other than the organization’s mission.

Create a new, organization-specific profile and use it exclusively for the organization’s messages. Then create a second profile in case Facebook gives you a “time out” for misbehavior of some sort. (too many friend requests, too many duplicate posts to too many groups, etc.) I have two professional profiles:
#First Name Last Name
#First Name Executive Director
They are otherwise identical in virtually every way, so readers really can’t tell one from the other.

Using these methods, I was able to actively participate in approximately 25 Facebook groups worldwide (including 4 condition-specific groups where I was admin), multiple Facebook pages, and 3 Twitter feeds with thousands of followers.
I used “push” tools in Constant Contact to push content to the pages and Twitter, and then I relayed that content to “friendly” groups worldwide. All of that content was very easy to distribute, and the degree to which it was welcomed was directly related to the relationships developed with the other independent groups’ admins.

==Recommended Links==

*[http://www.casefoundation.org/social-media-tutorials The Case Foundation's Social Media Tutorials]
*[http://www.cdc.gov/healthcommunication/ToolsTemplates/SocialMediaToolkit_BM.pdf?s_cid=tw_eh_135 CDC's Health Communicator's Social Media Toolkit]
*[http://www.youtube.com/t/ngo_tips YouTube Tips for NGOs]
*[http://ow.ly/35h1M Social Media: Tips and Tricks.]
*[http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook/ 10 Tips for Non-Profits on Facebook]
*[http://www.blogtips.org/ Blog Tips for Non-Profits]

If you would like to see examples of social media pages, visit Genetic Alliance's pages:

*[http://www.facebook.com/group.php?gid=15453400385&ref=ts http://www.facebook.com/group.php?gid=15453400385&ref=ts]

*[http://www.linkedin.com/companies/genetic-alliance http://www.linkedin.com/companies/genetic-alliance]

*[http://twitter.com/geneticalliance http://twitter.com/geneticalliance]

*[http://www.youtube.com/geneticalliance http://www.youtube.com/geneticalliance]

== Questions and Answers ==

*'''''How has your organization responded to requests from families who want to start a group on Facebook? Is it better to start one as an organization in order to keep control?'''''
** We did start our own Facebook Group and Cause so that we would have some control. We have raised a couple hundred dollars on the site (with literally no work).
**We have a Facebook Causes page and our members have their own Facebook pages. Then they can join our Facebook cause and leave comments and such on the cause page and information on their own pages.
**I think there are several issues to think about here. One is whether you can show up on every blog, online group, MySpace or Facebook venue. I think they are just going to proliferate & at some point you can't control the space/content/representation. The terms and conditions of these online spaces are widely variable. In some everything that's shared/written becomes the property of the sponsor who can edit, use, re-publish or use for publicity. There is no privacy, no ownership, no accountability. Though they seem like "safe spaces", many of them are filled with both spammers and porn folks. Also, many sites are searchable by google or other search engines. Cyberspace is notoriously hard to control, if control is a top priority of the organization. That too requires an investment to maintain. On the other hand, presidential candidates have gotten elected recently using these social networking tools successfully and raised $500 million online, largely from people giving $100 or less.

*'''''What happens if other Facebook Groups or Causes exist for the same condition as mine?'''''
:We as an organization (Cystinosis Research Network) started a Facebook cause (which was very straightforward to do) under the title "Cystinosis". We've raised a few hundred dollars and have had nearly 1,000 join the cause with almost no effort.

:We've recently run across another cause for cystinosis which was started by someone we aren't familiar with. Donations are going to the other advocacy group in the U.S., which is fine, except he used our logo, website address and vision and mission information. I've "facebooked" the cause administrator just to point out the inconsistency and the confusion it might provide for possible donors with no response back.

:Finally, one of our medical advisory board members decided to start a CRN Facebook cause herself, as she didn't find CRN when she searched (our fault, should have titled our cause "CRN" specifically, not the general "cystinosis"). Donations from her cause go to CRN, and frankly, she did a much nicer job than us in setting it up! We've decided that having the two sites is complimentary in the end.

:I guess my point is that Facebook is a fairly uncontrolled space, putting your organization as a cause can provide very easily collected modest donations and raise awareness, but there is always the possibility (as in many situations, I suppose, like blogs, etc.) where other individuals can use information from your organization without your knowledge, which may or may not lead to any significant misunderstandings or harm.

*'''''How does a group go about getting permission to use photos from conferences on social media websites and in enewsletters? Additionally, if photos are used on Facebook, how does 'liking', 'sharing', and 'tagging' interact with privacy violations?'''''

:*Team Sanfilippo has a Facebook page and a private MPS community page as well. We have put posts up on occasion asking permission and parents have responded in several ways. Some have said use whatever you see online of my child, others have sent us a few pictures and and some have said to take anything from their child's personal site we want. So we print those threads out in case of an issue down the road. We've never run into any issues so far.
:*We have a photo/video release at our conferences that we ask families to sign, which basically is a waiver for any electronic or print distribution. However, sometimes families just send us photos via email, etc., to be used in our newsletter and don’t necessarily provide a formal release. For many years before we had an electronic newsletter, the pictures were used in our print newsletter. However, we have now decided to implement a policy wherein we obtain a formal release for use of any photos submitted by any mechanisms. I do have to make the disclaimer that we try not to identify any minor by name in photos. We do have a FB page, and we have “turned off” the ability for anyone other than the administrator to upload photos and our policy is not to upload any photos organizationally of patients. We also have a private password protected online community which does allow the user to upload pictures to their personal page. The community use agreement contains a disclaimer to the effect that although the site is private and password protected, we are not responsible for and cannot protect against the potential use of the photos outside the online community (because a member copies it and uses it elsewhere).

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Blogging]]
*[[Building a Website]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[People and Roles]]
*[[Recruiting]]
**[[Publicity and General Media]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Taking Credit Cards on the Web]]

Social Networking

2018-07-30T20:49:38Z

Aguise: /* Best Practices */

Social networking sites have seen a dramatic increase in popularity, leaving many advocacy organizations wondering the best way to engage with and integrate this technology into their organizations. Information on [http://www.facebook.com Facebook] is shared below, but feel free to help us expand and include information on other social networking sites, such as [http://www.myspace.com MySpace] and [http://www.twitter.com Twitter].

Social media can be a very useful tool for interacting with your community. Many organizations use social media (e.g. Twitter, Facebook and others) as a broadcast communication tool, updating their community and thepublic about progress or new developments with their registry or biobank. This is just the beginning. Social media can also be used strategically to listen to and engage with your community. [http://www.slideshare.net/Radian6/30-ideas-for-your-2012-social-media-plan Radian6] has created a wonderful resource, 30 ideas for your social media plan in 2012 that provides insight on how to use social media more effectively. Once your social media plan is in place, be sure to [http://blog.kissmetrics.com/science-of-social-timing-1 time your posts] for when your audience is most likely to be listening.

== Facebook ==
=== Where do I start? ===

Facebook has many different ways to be involved as an organization, such as Causes and Groups. It might be easiest to just start with your own personal profile so you understand what your constituents are seeing from the user side. "Friend them,"
watch their behavior, what attracts, what doesn't, join Cause Pages and Fan Pages of other non-profits and get their updates and announcements on Facebook and you'll pick it up. Or find a constituent/volunteer who's already "into it" and ask them to be a "virtual" volunteer leader of your Facebook presence to grow it organically. To learn more about Facebook pages, you can read [[Media:Facebook_Pages_Insider's_Guide.pdf|"The Insider's Guide."]]

The following is one organization's take on how to use Facebook:

Eleni Tsigas

Preeclampsia Foundation

"When you do a Facebook Ad, including Boosted Posts, you can run it to current fans or with an exception criteria that does not include your current Fans. That being said, I would hesitate to boost ANY post unless there was a specific drive/aim in us doing so. Boosting it just to get visibility with no call-to-action is not an effective use of money. Driving general Likes on the other hand, does serve us well and is worth the investment, though if you ever got to the point where you had exhausted potential clients, I would recommend that you take a break for some time.

In addition, Facebook (and social media in general) raises AWARENESS, not funds. Email marketing is much better suited for that purpose, and better yet, peer-to-peer requests. Facebook does, however, remind people of important things like "Oh, I should go register for a walk and start fundraising." People make the mistake of assuming it is a panacea instead of one more tool in the communication arsenal.”

*'''Causes''' 

Any Facebook users will be able to see all your NonProfit's Cause Pages in one place that looks like [https://apps.facebook.com/causes/ this]. But the NPO as an entity won't be able to manage relationships with these User-created Cause Pages without this approval from the Cause Application Company, Project Agape.

As an approved Partner, you'll be granted access to a different background ADMIN page that through a portal page that only organizations are be able to access. From there, you'll be able to "designate" which of all the Cause Pages out there is the "official" Cause Page of the organization from that ADMIN area. You can still need to create your own Cause page from the User side as a leader of the organization and then designate THAT one as the "official" Cause page. Or choose None as "official" and just receive donations as the chosen beneficiary of the multiple pages created to support your cause.

You'll also have options from your ADMIN area to "Manage Causes" and can "disassociate" any that you don't want to be associated with your Cause. You can also "Manage Donations," where you can see all your donors, download reports to add them to your donor database, have options for "thank them" using Facebook, etc. One point to be aware of: The official Causes Partner reports often list as Anonymous some contributions for which an individual donor is identified on the specific Cause page where the donation was made.(This depends on which box the donor checks at the time of the donation.) Unless you keep track of each associated Cause page, you will miss the opportunity to thank some donors who are identified on the individual Cause page but not on the Causes Partner reports. You can also administer Cause Petitions within your ADMIN area where you appeal for people to "sign" a collective petition advocating for some sort of change.

Then encourage any of your constituents who want to create their own Cause Page to do so and ALL of them can be set to "benefit" your 501(c)(3). Anyone can create a Cause page if they add the Cause application to their Facebook Profile. They can join lots of Causes and create multiple Cause pages for causes they care about. They "choose" who their Cause page will benefit from any nonprofit organization that is listed in [http://www.guidestar.org Guidestar database].

Then keep creating ways in your campaigns/appeals/advocacy alerts to give your constituents a way to viral your message to everyone on their Cause page with "canned" text/graphics/links back to page on your website and you've got a movement.
People always respond best to appeals made by people they know. Empower your constituents to be ambassadors of your messages. They get the experience of helping the cause they care about and have passion to share with others they know. You get people to reach more people with your appeals for the cause than you would ever reach in a top-down message delivery strategy.

More good information about Causes can be accessed from Facebook's [https://apps.facebook.com/causes/ Causes' FAQs] and [http://apps.facebook.com/causes/about?m=736620da here].

*'''Groups''' 

Facebook Group pages are very easy to create also, but are more like an open or closed online group meeting space. Doesn't
have near the tools for NPO communications and outreach and fundraising, but it has it functions. We have a group page for volunteers [http://www.facebook.com/groups.php?ref=sb#/group.php?gid=11572144041 here], but we haven't done a lot with it except let it grow and share "news" posts and links. It's still grown to over 600 in last year.

An idea for patient privacy is to open your group page only to those who have signed up as members of your Association.
Those who are NOT members, can be messaged as to their affiliation (I have a sister with this disease, my child has this disease…)
The message is sent by going to the inquirer's own FB page and clicking on SEND A MESSAGE.
It not only helps with patient privacy, but provides new members.

The only drawback to this system is if the person does not have the message ability
on their FB page when one goes to message them to ask their affiliation….

Also, there are sometimes patients who, for various reasons, start another FB page
on the same disease… these are usually not a big draw from the "official" disease page and
serve a purpose for their group. One can ask them to be a Friend, posting when
appropriate on these other pages, but not so often as to appear to be FB-stalking them.

* 10 Tips for Non-Profits on Facebook -
http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook

*'''Discussion following #deleteFacebook in 2018''' 

---"The HLRCC Family Alliance has wrestled with the use of the Facebook Group and other forums for some years.
We made the Facebook group secret which means that not only are posts private, but the member list is also. As it is not found by search people have to find it via the website and send an email to contact and receive an invitation to join. Or people can add family and Facebook friends.
We were finding nevertheless that there were limitations on long-term functionality with older posts being difficult to find if longer than a year or two old.
About three years ago an organisation called Smart Patients was started from a previous list forum called ACOR. It supports all medical conditions with a set of communities and we created one for HLRCC.The admin and IT support are second to none. We have encouraged the Facebook group to become members and about two thirds have 200 out of 300
The Facebook group continues but we have people in Smart Patients with no Facebook account so we have some cross communication issues."

---"I’m glad to see you mentioning Smart Patients. I recently joined Smart Patients because of a health condition with which I was diagnosed. From the patient perspective, it seems superbly run, though I know absolutely nothing about what happens behind the curtain. I recently heard something that stuck with me. It was on a NPR program about Facebook moving to a pay for service model. “If you’re not PAYING for the product, you ARE the product.” One concern I have about Smart Patients is that, like Facebook, it does share anonymized data with third parties without the consent of members: https://www.smartpatients.com/faq#what-is-smart-patients."

---"When I was in charge of social media for The XLH Network, Inc., I resisted creating a Facebook group, for all the reasons that are now being addressed -- concerns about privacy, even in a closed group; the lack of email addresses for our database (so we didn't "own" the membership -- Facebook did); and dividing up our community into a variety of platforms. I don't know for sure that it was the right decision, but at least it meant that the Network has always had an alternative to Facebook in place.

The Network started as a listserv, and then the membership transferred to a forum. Unfortunately, forums aren't as easy/convenient to use as Facebook (although they offer a lot of benefits, including being able to organize responses by topic, which makes them highly searchable, and you can collect a lot of advice on repeat topics over the years), so it's difficult to get engagement there. But at least the nonprofit retains ownership of the membership, which it doesn't have with any interactions on Facebook, .

Since we had a forum already, we didn't need a platform like SmartPatients or PatientsLikeMe.com, and creating accounts with them would have split our community even further (some at Facebook, some at the Network's forum and some at these other platforms). Personally, both of those options worry me in much the same way that Facebook does, since they're FOR-PROFIT entities, based on their dot-com URLs.

To some extent, in this day and age, it's necessary to split the community and offer a variety of platforms for discussion -- some people just won't use a forum and some just won't use Facebook, and so on. (We considered creating a Google group, but just didn't have the experienced personnel to monitor it, and all platforms need monitoring.) So the Network maintains a Facebook page, but encourages taking private discussion over at the forum.

Just to throw out another concern with Facebook -- a few months ago, some consultants started stalking our patient community on Facebook. I don't even know how they did it, because I wasn't able to duplicate their search results, but they were able to find out who on Facebook mentioned XLH in their PRIVATE timelines/profiles. The consultants then sent private messages to those people to ask them to participate in some research. At first, we thought they were scraping info from people who posted to the Network's page, which was bad enough, but it appeared to go beyond that, to people who had never posted to the page, but mentioned XLH in their private timelines. I still don't know how they did that, but it's worrisome."

---"Our Facebook group pre-dates the organization that I run. I am heavily invested in it, but it’s not under our organization. I think for now it will continue to be most appropriate for our condition. I see a lot of benefits to the FB platform for our patient families - the cross talk with groups for comorbidities and the ability to message and friend other families. I’ve learned a lot about other patients from what they post outside of the group, just seeing their everyday lives, that helps me as a caregiver and as an advocate. That is one thing that you would never get from a stand alone forum. That said, it’s pretty clear that Facebook doesn’t really care about group users and there are plenty of frustrating things about the features for groups.

I’ve set up Vanilla Forums for another organization:
https://vanillaforums.com/en/software/
We set up the self-hosted open source product, so it is free but has to be maintained. I think for most groups I’d recommend using their paid, hosted product though. It’s not cheap. I wonder if they may have some flexible pricing for non-profits though.

The Chordoma Foundation launched a community recently on this platform
https://personifycorp.com/small-world-community/
I’ve been curious about that but don’t know anymore than what they have publicized about it.

I signed up for SmartPatients to check it out and registered for a group (or tag in SP) for a brain condition relevant to our syndrome. I found it mildly glitchy (not terrible, but not thrilling either) and the group had seen very light use. I found that via tags in posts, I could access other conditions that I’m not sure I was supposed to be able to access. I think it could have potential, but it seemed like it may have lost momentum to me.

I think this is an interesting conversation, I’d love to see better platforms for our groups flower. But for us there’s not a strong need yet I think."

---"We have been struggling with this as well for several years now. The largest and most active private FB group for our patient community was started by a group of patients and is not administrated by us or any organization. From the very beginning I have been struggling to figure out community forum options because I never felt comfortable with a private FB group for all the reasons already stated here. So we did start a Smart patient community, but it hasn’t gotten the traction we had hoped.

We have discussed this often with the Genetic Alliance to see if there was a solution as part of the PEER platform. Since it is non profit and already has some strong privacy built into it, perhaps if enough of the groups on the PEER platform are interested it is something we could pursue.

Our other thought is to see if building out a private community forum from our CMS vendor is an option, so that we do have ownership of the members and can put privacy assurances into place. Has anyone gone this route?"

== SmartPatients ==

"About three years ago an organisation called Smart Patients was started from a previous list forum called ACOR. It supports all medical conditions with a set of communities and we created one for HLRCC.The admin and IT support are second to none. We have encouraged the Facebook group to become members and about two thirds have 200 out of 300 The Facebook group continues but we have people in Smart Patients with no Facebook account so we have some cross communication issues."

"I signed up for SmartPatients to check it out and registered for a group (or tag in SP) for a brain condition relevant to our syndrome. I found it mildly glitchy (not terrible, but not thrilling either) and the group had seen very light use. I found that via tags in posts, I could access other conditions that I’m not sure I was supposed to be able to access. I think it could have potential, but it seemed like it may have lost momentum to me."

"SmartPatients has the concept that all conversations of all communities are accessible instead of having a separate silo for each condition. People can be members of several communities and can follow tags that they are interested in. This means that for example information about a particular drug side effect can be found across conditions. It is very open to any suggestion for improvement via a Site Feedback tag. You will always get a personal reply."

==Twitter==

===Introduction===
Twitter is a social networking site that begins with the question, "What are you doing?" Twitter is much more streamlined than facebook; user profiles are limited to name, location and a 140 character bio. Twitter status updates or "tweets" are also limited to 140 characters. They can include links to outside sites but cannot included embedded photos, video or other content. Twitter users can upload a profile picture and [http://mashable.com/2009/05/23/twitter-backgrounds/ create a customized background] for their page but cannot make further customizations.

===Terminology===
'''Tweet''': A message/status update on Twitter of 140 characters or less.
 '''@''': Putting the @ sign before a twitter username (i.e. @geneticalliance) will create a link to that person's Twitter page within your tweet
 '''RT''' or '''Re-tweet''': When a user re-broadcasts a tweet written by someone else. These posts usually begin with "RT @twitteruser:" to give credit to the person who wrote the original tweet.
 '''Hashtag''' or '''#''': This is a way of denoting a keyword of conversation topic. The word after the hashtag is clickable and will bring you to a display of every other Tweet which contains the same hashtag. These can be used to create a meta-dialogue or to track the conversation about a certain topic. Sometimes groups will schedule chats on Twitter, which are identified by a specific hashtag. Users can join in the chat just by clicking on the hashtag or by using a third-party site such as [http://www.tweetchat.com Tweet Chat].

===Twitter Clients===
A Twitter client can often provide more features and functionality than the main website. Although your content still appears on Twitter, and is still subject to the same limitations, a small line underneath your post will let others know what client you are using; i.e. "via TweetDeck." Some clients allow you to manage more than one Twitter account from the same place, and many will also let you update Facebook, LinkedIn and other social media sites simultaneously. Some also allow you to schedule your tweets to post at a later time.

Here are some popular Twitter clients:
*[http://www.hootsuite.com Hoot Suite]
*[http://www.tweetdeck.com Tweet Deck]
*[http://www.tweetmeme.com Tweet Meme]

===Best Practices===
'''Follow people who follow you''' - If someone follows you, it is considered courteous to follow them back. If you are concerned that following too many people will clog up your Twitter stream, create a list of those most important to you so you don't miss out on anything they are saying.
 '''Re-tweet''' - It's that simple. If someone says something funny, interesting or thought-provoking, share it with your network. It's a great way to get them to notice you and maybe remember you the next time you want your own content re-tweeted. Always make sure to start a re-tweet with "RT @username:" Twitter doesn't do this automatically when you click the re-tweet button; if you just click the button, your RT won't show up in their @ feed, so you won't get credit for helping out!
 '''Get involved in the dialogue''' - Twitter is not a place for wallflowers. It's also not a place to constantly promote yourself or your brand. There is a place for that, but self-promotion should make up less than 10% of your tweets, on average. If you participate in the conversation and post content that is valuable to your followers, you will form lasting relationships which can translate to valuable partnerships on the web and in the real world.

==Discussion Forums==
===Teen Discussion Forum===
Teen discussion forums are online discussion sites for teenagers to share their stories and experiences with one another. People participating in the forum may cultivate social bonds and interest groups from a topic made from the discussions. Since participating teenagers will most likely be underage, it will require a different set of development and maintenance methods than the ones used for a regular discussion forum. Here are several issues to consider:

'''Who would be the administrator for such a site?

An administrator is necessary for two reasons:
*Kids might end up inadvertently submitting incorrect medical information that could then go viral
*There is the risk of improper posts (sexual, harassing, flaming content…)

'''Should a Listserv or a chat area be offered?

Again, both would require supervision and the time and effort of a staff member.

'''What other issues do I need to look out for?

There is a great deal of liability involved when dealing with any activity including minors. Some cyber insurance would not cover such an undertaking – at least not without resistance and a costly rider.

==How do I keep up?==

Tips provided by Jim Moore

'''Facebook'''

I did several things to keep track of FB activity—this is my plan. If it doesn’t work for you, please ignore it:

# Regular searches for new groups and pages. Use the same search engine word strings you’d use on Google and mix them up. You will find them.
# Join the groups...and be forthright about who you are.
##If the groups refuse to admit you, infiltrate with another volunteer who is “just a parent.” Don’t use official organization reps for this. Just pick a “friend” you trust who’s not on the board or a committee, etc. and have them join.
# Turn on “notifications” for each group. Turn on “email” in your notifications settings. Select ALL posts to the group for notifications.
## Prepare for a deluge of email notifications.
##Note that threads have “subject” lines, so if a thread does not pertain, sort by subject and delete the whole lot of ‘em.
#Skim ALL subject matter looking for “opportunities.” (Prioritize to those message threads where real expertise is required.) I define opportunity as:
##Newbie looking for solid info;
##Misinformation;
##“I dunnos”
##And so on.
##Above all, wait for “critical mass” to build in the message thread. If you respond to the initial post, only the questioner will see it. Wait until 15 or 20 people have chimed in and then drop it on ‘em. Thread participants will ALL get a notification of another post to the thread, and they’ll all benefit...and from an organizational marketing point of view, they will all see your organization in action at its best. (obvious exception would be for a critical item where time is of the essence...e.g. prenatal diagnosis or life-threatening situation or “the meeting at the school is tomorrow!”)
#Generate boilerplate. Nothing is more time-consuming than writing the same thing over and over again, and freelancing every response introduces the opportunity for mistakes and omissions.
## Remember: there are really only 10 to 20 questions – asked over and over again – perhaps many permutations, but the right guidance is still the right guidance.
##Create a library of boilerplate by subject.
##Save them in MS Word or similar so you can just open the file, copy and paste.
##Embed links to info on your website prolifically. Drag them to your organization, and use the boilerplate as a preamble to say “find this here and find that there.”
###My philosophy is to never simply hand it to them. Instead, act like a library and have them come and get it. This way, they learn about the library, and they know to come to the library next time they have a question.
##Disclose that it’s boilerplate with a custom intro such as, “[Name], We have guidance on this subject. This is a far more comprehensive response that your answer may require, but you may find it helpful. You may wish to save this for future reference. [insert boilerplate]. At the end of each boilerplate response, remind the reader that it’s boilerplate and point them to where they can find more info.
##Name the files “boilerplate-[subject}” so you can find them using Windows Explorer search tools.
##Keep the boilerplate up-to-date. This is more work than it might seem, because most boilerplate ends up littered with hyperlinks to docs on your site and elsewhere, and much of the baseline guidance needs regular review.
##Don’t be afraid to be comprehensive. I always got rave reviews on the boilerplate and many “secondary” thank-yous from other readers in the thread.
#Be strategic. Don’t “helicopter.” Respect the group and just “show up big time” when it really counts.
#ASK PERMISSION: before posting things like events, research recruitment, fundraising and so on. Most will be accommodating, but if they say “no fundraising” or “just the specific variation we serve”, it’s their group.
#DEBATE: inevitably you’ll encounter some preposterous nonsense or another that can’t be ignored. Debate vigorously but respectfully, and then TRUST THE AUDIENCE to know the difference between nonsense and solid info. Your debate “opponent” will never admit being wrong or admit “defeat,” so that’s not a goal. Make your points well and respectfully, then walk away. (easier said than done sometimes, and this is NOT my forte’) J.

You just read all that. I don’t have to tell you that it’s tons of work. But so is a conference, creating a website, publishing booklets and so on. This is currently where the people are (social media), and you need to go to where the people are and meet them on their turf.

Get help. If you have several volunteers you truly trust, give them your login. Yes, let them impersonate you....within strict guidelines. This is the beauty of boilerplate. The words are tried and true...vetted. Your surrogates are just that...clones who have strict marching orders. And because they are using “your” accounts and memberships, you can see everything they do as they do it. Supervise and train. It will pay off quickly and give you time to focus on other things while still having a huge (or in today’s political vernacular Yuuuuge!) social media presence.

'''Twitter'''

Twitter is even bigger than this, and it involves lots of one-on-one engagement to build followers and pay your dues with those followers. Suffice it to say that Twitter is all about mutual back scratching. I’ll reserve that for another time.

'''Use Multiple Social Media Profiles'''

If you are using your personal profile, the one with photos of your cat and thoughts on the upcoming election, stop. You’re bound to alienate lots of people with your “other” posts.

Your organization profile should be utterly bland on every front other than the organization’s mission.

Create a new, organization-specific profile and use it exclusively for the organization’s messages. Then create a second profile in case Facebook gives you a “time out” for misbehavior of some sort. (too many friend requests, too many duplicate posts to too many groups, etc.) I have two professional profiles:
#First Name Last Name
#First Name Executive Director
They are otherwise identical in virtually every way, so readers really can’t tell one from the other.

How to develop a “split-Facebook-personality.” This “boilerplate” was written to guide people who are concerned about privacy to create unique profiles to use exclusively for the condition groups. But the principles are the same in terms of creating your professional profile for the organization: http://www.genetic.org/Portals/0/Public/Docs/Protect%20Your%20Privacy%20with%20Multiple%20Facebook%20Accounts.pdf

Using these methods, I was able to actively participate in approximately 25 Facebook groups worldwide (including 4 condition-specific groups where I was admin), multiple Facebook pages, and 3 Twitter feeds with thousands of followers.
I used “push” tools in Constant Contact to push content to the pages and Twitter, and then I relayed that content to “friendly” groups worldwide. All of that content was very easy to distribute, and the degree to which it was welcomed was directly related to the relationships developed with the other independent groups’ admins.

==Recommended Links==

*[http://www.casefoundation.org/social-media-tutorials The Case Foundation's Social Media Tutorials]
*[http://www.cdc.gov/healthcommunication/ToolsTemplates/SocialMediaToolkit_BM.pdf?s_cid=tw_eh_135 CDC's Health Communicator's Social Media Toolkit]
*[http://www.youtube.com/t/ngo_tips YouTube Tips for NGOs]
*[http://ow.ly/35h1M Social Media: Tips and Tricks.]
*[http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook/ 10 Tips for Non-Profits on Facebook]
*[http://www.blogtips.org/ Blog Tips for Non-Profits]

If you would like to see examples of social media pages, visit Genetic Alliance's pages:

*[http://www.facebook.com/group.php?gid=15453400385&ref=ts http://www.facebook.com/group.php?gid=15453400385&ref=ts]

*[http://www.linkedin.com/companies/genetic-alliance http://www.linkedin.com/companies/genetic-alliance]

*[http://twitter.com/geneticalliance http://twitter.com/geneticalliance]

*[http://www.youtube.com/geneticalliance http://www.youtube.com/geneticalliance]

== Questions and Answers ==

*'''''How has your organization responded to requests from families who want to start a group on Facebook? Is it better to start one as an organization in order to keep control?'''''
** We did start our own Facebook Group and Cause so that we would have some control. We have raised a couple hundred dollars on the site (with literally no work).
**We have a Facebook Causes page and our members have their own Facebook pages. Then they can join our Facebook cause and leave comments and such on the cause page and information on their own pages.
**I think there are several issues to think about here. One is whether you can show up on every blog, online group, MySpace or Facebook venue. I think they are just going to proliferate & at some point you can't control the space/content/representation. The terms and conditions of these online spaces are widely variable. In some everything that's shared/written becomes the property of the sponsor who can edit, use, re-publish or use for publicity. There is no privacy, no ownership, no accountability. Though they seem like "safe spaces", many of them are filled with both spammers and porn folks. Also, many sites are searchable by google or other search engines. Cyberspace is notoriously hard to control, if control is a top priority of the organization. That too requires an investment to maintain. On the other hand, presidential candidates have gotten elected recently using these social networking tools successfully and raised $500 million online, largely from people giving $100 or less.

*'''''What happens if other Facebook Groups or Causes exist for the same condition as mine?'''''
:We as an organization (Cystinosis Research Network) started a Facebook cause (which was very straightforward to do) under the title "Cystinosis". We've raised a few hundred dollars and have had nearly 1,000 join the cause with almost no effort.

:We've recently run across another cause for cystinosis which was started by someone we aren't familiar with. Donations are going to the other advocacy group in the U.S., which is fine, except he used our logo, website address and vision and mission information. I've "facebooked" the cause administrator just to point out the inconsistency and the confusion it might provide for possible donors with no response back.

:Finally, one of our medical advisory board members decided to start a CRN Facebook cause herself, as she didn't find CRN when she searched (our fault, should have titled our cause "CRN" specifically, not the general "cystinosis"). Donations from her cause go to CRN, and frankly, she did a much nicer job than us in setting it up! We've decided that having the two sites is complimentary in the end.

:I guess my point is that Facebook is a fairly uncontrolled space, putting your organization as a cause can provide very easily collected modest donations and raise awareness, but there is always the possibility (as in many situations, I suppose, like blogs, etc.) where other individuals can use information from your organization without your knowledge, which may or may not lead to any significant misunderstandings or harm.

*'''''How does a group go about getting permission to use photos from conferences on social media websites and in enewsletters? Additionally, if photos are used on Facebook, how does 'liking', 'sharing', and 'tagging' interact with privacy violations?'''''

:*Team Sanfilippo has a Facebook page and a private MPS community page as well. We have put posts up on occasion asking permission and parents have responded in several ways. Some have said use whatever you see online of my child, others have sent us a few pictures and and some have said to take anything from their child's personal site we want. So we print those threads out in case of an issue down the road. We've never run into any issues so far.
:*We have a photo/video release at our conferences that we ask families to sign, which basically is a waiver for any electronic or print distribution. However, sometimes families just send us photos via email, etc., to be used in our newsletter and don’t necessarily provide a formal release. For many years before we had an electronic newsletter, the pictures were used in our print newsletter. However, we have now decided to implement a policy wherein we obtain a formal release for use of any photos submitted by any mechanisms. I do have to make the disclaimer that we try not to identify any minor by name in photos. We do have a FB page, and we have “turned off” the ability for anyone other than the administrator to upload photos and our policy is not to upload any photos organizationally of patients. We also have a private password protected online community which does allow the user to upload pictures to their personal page. The community use agreement contains a disclaimer to the effect that although the site is private and password protected, we are not responsible for and cannot protect against the potential use of the photos outside the online community (because a member copies it and uses it elsewhere).

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Blogging]]
*[[Building a Website]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[People and Roles]]
*[[Recruiting]]
**[[Publicity and General Media]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Taking Credit Cards on the Web]]

Social Networking

2018-07-30T20:43:40Z

Aguise: /* Terminology */

Social networking sites have seen a dramatic increase in popularity, leaving many advocacy organizations wondering the best way to engage with and integrate this technology into their organizations. Information on [http://www.facebook.com Facebook] is shared below, but feel free to help us expand and include information on other social networking sites, such as [http://www.myspace.com MySpace] and [http://www.twitter.com Twitter].

Social media can be a very useful tool for interacting with your community. Many organizations use social media (e.g. Twitter, Facebook and others) as a broadcast communication tool, updating their community and thepublic about progress or new developments with their registry or biobank. This is just the beginning. Social media can also be used strategically to listen to and engage with your community. [http://www.slideshare.net/Radian6/30-ideas-for-your-2012-social-media-plan Radian6] has created a wonderful resource, 30 ideas for your social media plan in 2012 that provides insight on how to use social media more effectively. Once your social media plan is in place, be sure to [http://blog.kissmetrics.com/science-of-social-timing-1 time your posts] for when your audience is most likely to be listening.

== Facebook ==
=== Where do I start? ===

Facebook has many different ways to be involved as an organization, such as Causes and Groups. It might be easiest to just start with your own personal profile so you understand what your constituents are seeing from the user side. "Friend them,"
watch their behavior, what attracts, what doesn't, join Cause Pages and Fan Pages of other non-profits and get their updates and announcements on Facebook and you'll pick it up. Or find a constituent/volunteer who's already "into it" and ask them to be a "virtual" volunteer leader of your Facebook presence to grow it organically. To learn more about Facebook pages, you can read [[Media:Facebook_Pages_Insider's_Guide.pdf|"The Insider's Guide."]]

The following is one organization's take on how to use Facebook:

Eleni Tsigas

Preeclampsia Foundation

"When you do a Facebook Ad, including Boosted Posts, you can run it to current fans or with an exception criteria that does not include your current Fans. That being said, I would hesitate to boost ANY post unless there was a specific drive/aim in us doing so. Boosting it just to get visibility with no call-to-action is not an effective use of money. Driving general Likes on the other hand, does serve us well and is worth the investment, though if you ever got to the point where you had exhausted potential clients, I would recommend that you take a break for some time.

In addition, Facebook (and social media in general) raises AWARENESS, not funds. Email marketing is much better suited for that purpose, and better yet, peer-to-peer requests. Facebook does, however, remind people of important things like "Oh, I should go register for a walk and start fundraising." People make the mistake of assuming it is a panacea instead of one more tool in the communication arsenal.”

*'''Causes''' 

Any Facebook users will be able to see all your NonProfit's Cause Pages in one place that looks like [https://apps.facebook.com/causes/ this]. But the NPO as an entity won't be able to manage relationships with these User-created Cause Pages without this approval from the Cause Application Company, Project Agape.

As an approved Partner, you'll be granted access to a different background ADMIN page that through a portal page that only organizations are be able to access. From there, you'll be able to "designate" which of all the Cause Pages out there is the "official" Cause Page of the organization from that ADMIN area. You can still need to create your own Cause page from the User side as a leader of the organization and then designate THAT one as the "official" Cause page. Or choose None as "official" and just receive donations as the chosen beneficiary of the multiple pages created to support your cause.

You'll also have options from your ADMIN area to "Manage Causes" and can "disassociate" any that you don't want to be associated with your Cause. You can also "Manage Donations," where you can see all your donors, download reports to add them to your donor database, have options for "thank them" using Facebook, etc. One point to be aware of: The official Causes Partner reports often list as Anonymous some contributions for which an individual donor is identified on the specific Cause page where the donation was made.(This depends on which box the donor checks at the time of the donation.) Unless you keep track of each associated Cause page, you will miss the opportunity to thank some donors who are identified on the individual Cause page but not on the Causes Partner reports. You can also administer Cause Petitions within your ADMIN area where you appeal for people to "sign" a collective petition advocating for some sort of change.

Then encourage any of your constituents who want to create their own Cause Page to do so and ALL of them can be set to "benefit" your 501(c)(3). Anyone can create a Cause page if they add the Cause application to their Facebook Profile. They can join lots of Causes and create multiple Cause pages for causes they care about. They "choose" who their Cause page will benefit from any nonprofit organization that is listed in [http://www.guidestar.org Guidestar database].

Then keep creating ways in your campaigns/appeals/advocacy alerts to give your constituents a way to viral your message to everyone on their Cause page with "canned" text/graphics/links back to page on your website and you've got a movement.
People always respond best to appeals made by people they know. Empower your constituents to be ambassadors of your messages. They get the experience of helping the cause they care about and have passion to share with others they know. You get people to reach more people with your appeals for the cause than you would ever reach in a top-down message delivery strategy.

More good information about Causes can be accessed from Facebook's [https://apps.facebook.com/causes/ Causes' FAQs] and [http://apps.facebook.com/causes/about?m=736620da here].

*'''Groups''' 

Facebook Group pages are very easy to create also, but are more like an open or closed online group meeting space. Doesn't
have near the tools for NPO communications and outreach and fundraising, but it has it functions. We have a group page for volunteers [http://www.facebook.com/groups.php?ref=sb#/group.php?gid=11572144041 here], but we haven't done a lot with it except let it grow and share "news" posts and links. It's still grown to over 600 in last year.

An idea for patient privacy is to open your group page only to those who have signed up as members of your Association.
Those who are NOT members, can be messaged as to their affiliation (I have a sister with this disease, my child has this disease…)
The message is sent by going to the inquirer's own FB page and clicking on SEND A MESSAGE.
It not only helps with patient privacy, but provides new members.

The only drawback to this system is if the person does not have the message ability
on their FB page when one goes to message them to ask their affiliation….

Also, there are sometimes patients who, for various reasons, start another FB page
on the same disease… these are usually not a big draw from the "official" disease page and
serve a purpose for their group. One can ask them to be a Friend, posting when
appropriate on these other pages, but not so often as to appear to be FB-stalking them.

* 10 Tips for Non-Profits on Facebook -
http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook

*'''Discussion following #deleteFacebook in 2018''' 

---"The HLRCC Family Alliance has wrestled with the use of the Facebook Group and other forums for some years.
We made the Facebook group secret which means that not only are posts private, but the member list is also. As it is not found by search people have to find it via the website and send an email to contact and receive an invitation to join. Or people can add family and Facebook friends.
We were finding nevertheless that there were limitations on long-term functionality with older posts being difficult to find if longer than a year or two old.
About three years ago an organisation called Smart Patients was started from a previous list forum called ACOR. It supports all medical conditions with a set of communities and we created one for HLRCC.The admin and IT support are second to none. We have encouraged the Facebook group to become members and about two thirds have 200 out of 300
The Facebook group continues but we have people in Smart Patients with no Facebook account so we have some cross communication issues."

---"I’m glad to see you mentioning Smart Patients. I recently joined Smart Patients because of a health condition with which I was diagnosed. From the patient perspective, it seems superbly run, though I know absolutely nothing about what happens behind the curtain. I recently heard something that stuck with me. It was on a NPR program about Facebook moving to a pay for service model. “If you’re not PAYING for the product, you ARE the product.” One concern I have about Smart Patients is that, like Facebook, it does share anonymized data with third parties without the consent of members: https://www.smartpatients.com/faq#what-is-smart-patients."

---"When I was in charge of social media for The XLH Network, Inc., I resisted creating a Facebook group, for all the reasons that are now being addressed -- concerns about privacy, even in a closed group; the lack of email addresses for our database (so we didn't "own" the membership -- Facebook did); and dividing up our community into a variety of platforms. I don't know for sure that it was the right decision, but at least it meant that the Network has always had an alternative to Facebook in place.

The Network started as a listserv, and then the membership transferred to a forum. Unfortunately, forums aren't as easy/convenient to use as Facebook (although they offer a lot of benefits, including being able to organize responses by topic, which makes them highly searchable, and you can collect a lot of advice on repeat topics over the years), so it's difficult to get engagement there. But at least the nonprofit retains ownership of the membership, which it doesn't have with any interactions on Facebook, .

Since we had a forum already, we didn't need a platform like SmartPatients or PatientsLikeMe.com, and creating accounts with them would have split our community even further (some at Facebook, some at the Network's forum and some at these other platforms). Personally, both of those options worry me in much the same way that Facebook does, since they're FOR-PROFIT entities, based on their dot-com URLs.

To some extent, in this day and age, it's necessary to split the community and offer a variety of platforms for discussion -- some people just won't use a forum and some just won't use Facebook, and so on. (We considered creating a Google group, but just didn't have the experienced personnel to monitor it, and all platforms need monitoring.) So the Network maintains a Facebook page, but encourages taking private discussion over at the forum.

Just to throw out another concern with Facebook -- a few months ago, some consultants started stalking our patient community on Facebook. I don't even know how they did it, because I wasn't able to duplicate their search results, but they were able to find out who on Facebook mentioned XLH in their PRIVATE timelines/profiles. The consultants then sent private messages to those people to ask them to participate in some research. At first, we thought they were scraping info from people who posted to the Network's page, which was bad enough, but it appeared to go beyond that, to people who had never posted to the page, but mentioned XLH in their private timelines. I still don't know how they did that, but it's worrisome."

---"Our Facebook group pre-dates the organization that I run. I am heavily invested in it, but it’s not under our organization. I think for now it will continue to be most appropriate for our condition. I see a lot of benefits to the FB platform for our patient families - the cross talk with groups for comorbidities and the ability to message and friend other families. I’ve learned a lot about other patients from what they post outside of the group, just seeing their everyday lives, that helps me as a caregiver and as an advocate. That is one thing that you would never get from a stand alone forum. That said, it’s pretty clear that Facebook doesn’t really care about group users and there are plenty of frustrating things about the features for groups.

I’ve set up Vanilla Forums for another organization:
https://vanillaforums.com/en/software/
We set up the self-hosted open source product, so it is free but has to be maintained. I think for most groups I’d recommend using their paid, hosted product though. It’s not cheap. I wonder if they may have some flexible pricing for non-profits though.

The Chordoma Foundation launched a community recently on this platform
https://personifycorp.com/small-world-community/
I’ve been curious about that but don’t know anymore than what they have publicized about it.

I signed up for SmartPatients to check it out and registered for a group (or tag in SP) for a brain condition relevant to our syndrome. I found it mildly glitchy (not terrible, but not thrilling either) and the group had seen very light use. I found that via tags in posts, I could access other conditions that I’m not sure I was supposed to be able to access. I think it could have potential, but it seemed like it may have lost momentum to me.

I think this is an interesting conversation, I’d love to see better platforms for our groups flower. But for us there’s not a strong need yet I think."

---"We have been struggling with this as well for several years now. The largest and most active private FB group for our patient community was started by a group of patients and is not administrated by us or any organization. From the very beginning I have been struggling to figure out community forum options because I never felt comfortable with a private FB group for all the reasons already stated here. So we did start a Smart patient community, but it hasn’t gotten the traction we had hoped.

We have discussed this often with the Genetic Alliance to see if there was a solution as part of the PEER platform. Since it is non profit and already has some strong privacy built into it, perhaps if enough of the groups on the PEER platform are interested it is something we could pursue.

Our other thought is to see if building out a private community forum from our CMS vendor is an option, so that we do have ownership of the members and can put privacy assurances into place. Has anyone gone this route?"

== SmartPatients ==

"About three years ago an organisation called Smart Patients was started from a previous list forum called ACOR. It supports all medical conditions with a set of communities and we created one for HLRCC.The admin and IT support are second to none. We have encouraged the Facebook group to become members and about two thirds have 200 out of 300 The Facebook group continues but we have people in Smart Patients with no Facebook account so we have some cross communication issues."

"I signed up for SmartPatients to check it out and registered for a group (or tag in SP) for a brain condition relevant to our syndrome. I found it mildly glitchy (not terrible, but not thrilling either) and the group had seen very light use. I found that via tags in posts, I could access other conditions that I’m not sure I was supposed to be able to access. I think it could have potential, but it seemed like it may have lost momentum to me."

"SmartPatients has the concept that all conversations of all communities are accessible instead of having a separate silo for each condition. People can be members of several communities and can follow tags that they are interested in. This means that for example information about a particular drug side effect can be found across conditions. It is very open to any suggestion for improvement via a Site Feedback tag. You will always get a personal reply."

==Twitter==

===Introduction===
Twitter is a social networking site that begins with the question, "What are you doing?" Twitter is much more streamlined than facebook; user profiles are limited to name, location and a 140 character bio. Twitter status updates or "tweets" are also limited to 140 characters. They can include links to outside sites but cannot included embedded photos, video or other content. Twitter users can upload a profile picture and [http://mashable.com/2009/05/23/twitter-backgrounds/ create a customized background] for their page but cannot make further customizations.

===Terminology===
'''Tweet''': A message/status update on Twitter of 140 characters or less.
 '''@''': Putting the @ sign before a twitter username (i.e. @geneticalliance) will create a link to that person's Twitter page within your tweet
 '''RT''' or '''Re-tweet''': When a user re-broadcasts a tweet written by someone else. These posts usually begin with "RT @twitteruser:" to give credit to the person who wrote the original tweet.
 '''Hashtag''' or '''#''': This is a way of denoting a keyword of conversation topic. The word after the hashtag is clickable and will bring you to a display of every other Tweet which contains the same hashtag. These can be used to create a meta-dialogue or to track the conversation about a certain topic. Sometimes groups will schedule chats on Twitter, which are identified by a specific hashtag. Users can join in the chat just by clicking on the hashtag or by using a third-party site such as [http://www.tweetchat.com Tweet Chat].

===Twitter Clients===
A Twitter client can often provide more features and functionality than the main website. Although your content still appears on Twitter, and is still subject to the same limitations, a small line underneath your post will let others know what client you are using; i.e. "via TweetDeck." Some clients allow you to manage more than one Twitter account from the same place, and many will also let you update Facebook, LinkedIn and other social media sites simultaneously. Some also allow you to schedule your tweets to post at a later time.

Here are some popular Twitter clients:
*[http://www.hootsuite.com Hoot Suite]
*[http://www.tweetdeck.com Tweet Deck]
*[http://www.tweetmeme.com Tweet Meme]

===Best Practices===
'''Follow people who follow you''' - If someone follows you, it is considered courteous to follow them back. If you are concerned that following too many people will clog up your Twitter stream, create a list of those most important to you so you don't miss out on anything they are saying.
 '''Re-tweet''' - It's that simple. If someone says something funny, interesting or thought-provoking, share it with your network. It's a great way to get them to notice you and maybe remember you the next time you want your own content re-tweeted. Always make sure to start a re-tweet with "RT @username:" Twitter doesn't do this automatically when you click the re-tweet button; if you just click the button, your RT won't show up in their @ feed, so you won't get credit for helping out!
 '''Get involved in the dialogue''' - Twitter is not a place for wallflowers. It's also not a place to constantly promote yourself or your brand. There is a place for that, but self-promotion should make up less than 10% of your tweets, on average. If you participate in the conversation and post content that is valuable to your followers, you will form lasting relationships which can translate to valuable partnerships on the web and in the real world.

Read the article, [http://www.openforum.com/idea-hub/topics/lifestyle/article/when-tweets-go-wrong-and-how-to-do-it-right-jean-chatzky?cid=em-smartbrief When Tweets Go Wrong - And How to Do it Right] to learn about how a company handled its mistake and for more tips.

==Discussion Forums==
===Teen Discussion Forum===
Teen discussion forums are online discussion sites for teenagers to share their stories and experiences with one another. People participating in the forum may cultivate social bonds and interest groups from a topic made from the discussions. Since participating teenagers will most likely be underage, it will require a different set of development and maintenance methods than the ones used for a regular discussion forum. Here are several issues to consider:

'''Who would be the administrator for such a site?

An administrator is necessary for two reasons:
*Kids might end up inadvertently submitting incorrect medical information that could then go viral
*There is the risk of improper posts (sexual, harassing, flaming content…)

'''Should a Listserv or a chat area be offered?

Again, both would require supervision and the time and effort of a staff member.

'''What other issues do I need to look out for?

There is a great deal of liability involved when dealing with any activity including minors. Some cyber insurance would not cover such an undertaking – at least not without resistance and a costly rider.

==How do I keep up?==

Tips provided by Jim Moore

'''Facebook'''

I did several things to keep track of FB activity—this is my plan. If it doesn’t work for you, please ignore it:

# Regular searches for new groups and pages. Use the same search engine word strings you’d use on Google and mix them up. You will find them.
# Join the groups...and be forthright about who you are.
##If the groups refuse to admit you, infiltrate with another volunteer who is “just a parent.” Don’t use official organization reps for this. Just pick a “friend” you trust who’s not on the board or a committee, etc. and have them join.
# Turn on “notifications” for each group. Turn on “email” in your notifications settings. Select ALL posts to the group for notifications.
## Prepare for a deluge of email notifications.
##Note that threads have “subject” lines, so if a thread does not pertain, sort by subject and delete the whole lot of ‘em.
#Skim ALL subject matter looking for “opportunities.” (Prioritize to those message threads where real expertise is required.) I define opportunity as:
##Newbie looking for solid info;
##Misinformation;
##“I dunnos”
##And so on.
##Above all, wait for “critical mass” to build in the message thread. If you respond to the initial post, only the questioner will see it. Wait until 15 or 20 people have chimed in and then drop it on ‘em. Thread participants will ALL get a notification of another post to the thread, and they’ll all benefit...and from an organizational marketing point of view, they will all see your organization in action at its best. (obvious exception would be for a critical item where time is of the essence...e.g. prenatal diagnosis or life-threatening situation or “the meeting at the school is tomorrow!”)
#Generate boilerplate. Nothing is more time-consuming than writing the same thing over and over again, and freelancing every response introduces the opportunity for mistakes and omissions.
## Remember: there are really only 10 to 20 questions – asked over and over again – perhaps many permutations, but the right guidance is still the right guidance.
##Create a library of boilerplate by subject.
##Save them in MS Word or similar so you can just open the file, copy and paste.
##Embed links to info on your website prolifically. Drag them to your organization, and use the boilerplate as a preamble to say “find this here and find that there.”
###My philosophy is to never simply hand it to them. Instead, act like a library and have them come and get it. This way, they learn about the library, and they know to come to the library next time they have a question.
##Disclose that it’s boilerplate with a custom intro such as, “[Name], We have guidance on this subject. This is a far more comprehensive response that your answer may require, but you may find it helpful. You may wish to save this for future reference. [insert boilerplate]. At the end of each boilerplate response, remind the reader that it’s boilerplate and point them to where they can find more info.
##Name the files “boilerplate-[subject}” so you can find them using Windows Explorer search tools.
##Keep the boilerplate up-to-date. This is more work than it might seem, because most boilerplate ends up littered with hyperlinks to docs on your site and elsewhere, and much of the baseline guidance needs regular review.
##Don’t be afraid to be comprehensive. I always got rave reviews on the boilerplate and many “secondary” thank-yous from other readers in the thread.
#Be strategic. Don’t “helicopter.” Respect the group and just “show up big time” when it really counts.
#ASK PERMISSION: before posting things like events, research recruitment, fundraising and so on. Most will be accommodating, but if they say “no fundraising” or “just the specific variation we serve”, it’s their group.
#DEBATE: inevitably you’ll encounter some preposterous nonsense or another that can’t be ignored. Debate vigorously but respectfully, and then TRUST THE AUDIENCE to know the difference between nonsense and solid info. Your debate “opponent” will never admit being wrong or admit “defeat,” so that’s not a goal. Make your points well and respectfully, then walk away. (easier said than done sometimes, and this is NOT my forte’) J.

You just read all that. I don’t have to tell you that it’s tons of work. But so is a conference, creating a website, publishing booklets and so on. This is currently where the people are (social media), and you need to go to where the people are and meet them on their turf.

Get help. If you have several volunteers you truly trust, give them your login. Yes, let them impersonate you....within strict guidelines. This is the beauty of boilerplate. The words are tried and true...vetted. Your surrogates are just that...clones who have strict marching orders. And because they are using “your” accounts and memberships, you can see everything they do as they do it. Supervise and train. It will pay off quickly and give you time to focus on other things while still having a huge (or in today’s political vernacular Yuuuuge!) social media presence.

'''Twitter'''

Twitter is even bigger than this, and it involves lots of one-on-one engagement to build followers and pay your dues with those followers. Suffice it to say that Twitter is all about mutual back scratching. I’ll reserve that for another time.

'''Use Multiple Social Media Profiles'''

If you are using your personal profile, the one with photos of your cat and thoughts on the upcoming election, stop. You’re bound to alienate lots of people with your “other” posts.

Your organization profile should be utterly bland on every front other than the organization’s mission.

Create a new, organization-specific profile and use it exclusively for the organization’s messages. Then create a second profile in case Facebook gives you a “time out” for misbehavior of some sort. (too many friend requests, too many duplicate posts to too many groups, etc.) I have two professional profiles:
#First Name Last Name
#First Name Executive Director
They are otherwise identical in virtually every way, so readers really can’t tell one from the other.

How to develop a “split-Facebook-personality.” This “boilerplate” was written to guide people who are concerned about privacy to create unique profiles to use exclusively for the condition groups. But the principles are the same in terms of creating your professional profile for the organization: http://www.genetic.org/Portals/0/Public/Docs/Protect%20Your%20Privacy%20with%20Multiple%20Facebook%20Accounts.pdf

Using these methods, I was able to actively participate in approximately 25 Facebook groups worldwide (including 4 condition-specific groups where I was admin), multiple Facebook pages, and 3 Twitter feeds with thousands of followers.
I used “push” tools in Constant Contact to push content to the pages and Twitter, and then I relayed that content to “friendly” groups worldwide. All of that content was very easy to distribute, and the degree to which it was welcomed was directly related to the relationships developed with the other independent groups’ admins.

==Recommended Links==

*[http://www.casefoundation.org/social-media-tutorials The Case Foundation's Social Media Tutorials]
*[http://www.cdc.gov/healthcommunication/ToolsTemplates/SocialMediaToolkit_BM.pdf?s_cid=tw_eh_135 CDC's Health Communicator's Social Media Toolkit]
*[http://www.youtube.com/t/ngo_tips YouTube Tips for NGOs]
*[http://ow.ly/35h1M Social Media: Tips and Tricks.]
*[http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook/ 10 Tips for Non-Profits on Facebook]
*[http://www.blogtips.org/ Blog Tips for Non-Profits]

If you would like to see examples of social media pages, visit Genetic Alliance's pages:

*[http://www.facebook.com/group.php?gid=15453400385&ref=ts http://www.facebook.com/group.php?gid=15453400385&ref=ts]

*[http://www.linkedin.com/companies/genetic-alliance http://www.linkedin.com/companies/genetic-alliance]

*[http://twitter.com/geneticalliance http://twitter.com/geneticalliance]

*[http://www.youtube.com/geneticalliance http://www.youtube.com/geneticalliance]

== Questions and Answers ==

*'''''How has your organization responded to requests from families who want to start a group on Facebook? Is it better to start one as an organization in order to keep control?'''''
** We did start our own Facebook Group and Cause so that we would have some control. We have raised a couple hundred dollars on the site (with literally no work).
**We have a Facebook Causes page and our members have their own Facebook pages. Then they can join our Facebook cause and leave comments and such on the cause page and information on their own pages.
**I think there are several issues to think about here. One is whether you can show up on every blog, online group, MySpace or Facebook venue. I think they are just going to proliferate & at some point you can't control the space/content/representation. The terms and conditions of these online spaces are widely variable. In some everything that's shared/written becomes the property of the sponsor who can edit, use, re-publish or use for publicity. There is no privacy, no ownership, no accountability. Though they seem like "safe spaces", many of them are filled with both spammers and porn folks. Also, many sites are searchable by google or other search engines. Cyberspace is notoriously hard to control, if control is a top priority of the organization. That too requires an investment to maintain. On the other hand, presidential candidates have gotten elected recently using these social networking tools successfully and raised $500 million online, largely from people giving $100 or less.

*'''''What happens if other Facebook Groups or Causes exist for the same condition as mine?'''''
:We as an organization (Cystinosis Research Network) started a Facebook cause (which was very straightforward to do) under the title "Cystinosis". We've raised a few hundred dollars and have had nearly 1,000 join the cause with almost no effort.

:We've recently run across another cause for cystinosis which was started by someone we aren't familiar with. Donations are going to the other advocacy group in the U.S., which is fine, except he used our logo, website address and vision and mission information. I've "facebooked" the cause administrator just to point out the inconsistency and the confusion it might provide for possible donors with no response back.

:Finally, one of our medical advisory board members decided to start a CRN Facebook cause herself, as she didn't find CRN when she searched (our fault, should have titled our cause "CRN" specifically, not the general "cystinosis"). Donations from her cause go to CRN, and frankly, she did a much nicer job than us in setting it up! We've decided that having the two sites is complimentary in the end.

:I guess my point is that Facebook is a fairly uncontrolled space, putting your organization as a cause can provide very easily collected modest donations and raise awareness, but there is always the possibility (as in many situations, I suppose, like blogs, etc.) where other individuals can use information from your organization without your knowledge, which may or may not lead to any significant misunderstandings or harm.

*'''''How does a group go about getting permission to use photos from conferences on social media websites and in enewsletters? Additionally, if photos are used on Facebook, how does 'liking', 'sharing', and 'tagging' interact with privacy violations?'''''

:*Team Sanfilippo has a Facebook page and a private MPS community page as well. We have put posts up on occasion asking permission and parents have responded in several ways. Some have said use whatever you see online of my child, others have sent us a few pictures and and some have said to take anything from their child's personal site we want. So we print those threads out in case of an issue down the road. We've never run into any issues so far.
:*We have a photo/video release at our conferences that we ask families to sign, which basically is a waiver for any electronic or print distribution. However, sometimes families just send us photos via email, etc., to be used in our newsletter and don’t necessarily provide a formal release. For many years before we had an electronic newsletter, the pictures were used in our print newsletter. However, we have now decided to implement a policy wherein we obtain a formal release for use of any photos submitted by any mechanisms. I do have to make the disclaimer that we try not to identify any minor by name in photos. We do have a FB page, and we have “turned off” the ability for anyone other than the administrator to upload photos and our policy is not to upload any photos organizationally of patients. We also have a private password protected online community which does allow the user to upload pictures to their personal page. The community use agreement contains a disclaimer to the effect that although the site is private and password protected, we are not responsible for and cannot protect against the potential use of the photos outside the online community (because a member copies it and uses it elsewhere).

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Blogging]]
*[[Building a Website]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[People and Roles]]
*[[Recruiting]]
**[[Publicity and General Media]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Taking Credit Cards on the Web]]

Social Networking

2018-07-30T20:40:57Z

Aguise: /* Where do I start? */

Social networking sites have seen a dramatic increase in popularity, leaving many advocacy organizations wondering the best way to engage with and integrate this technology into their organizations. Information on [http://www.facebook.com Facebook] is shared below, but feel free to help us expand and include information on other social networking sites, such as [http://www.myspace.com MySpace] and [http://www.twitter.com Twitter].

Social media can be a very useful tool for interacting with your community. Many organizations use social media (e.g. Twitter, Facebook and others) as a broadcast communication tool, updating their community and thepublic about progress or new developments with their registry or biobank. This is just the beginning. Social media can also be used strategically to listen to and engage with your community. [http://www.slideshare.net/Radian6/30-ideas-for-your-2012-social-media-plan Radian6] has created a wonderful resource, 30 ideas for your social media plan in 2012 that provides insight on how to use social media more effectively. Once your social media plan is in place, be sure to [http://blog.kissmetrics.com/science-of-social-timing-1 time your posts] for when your audience is most likely to be listening.

== Facebook ==
=== Where do I start? ===

Facebook has many different ways to be involved as an organization, such as Causes and Groups. It might be easiest to just start with your own personal profile so you understand what your constituents are seeing from the user side. "Friend them,"
watch their behavior, what attracts, what doesn't, join Cause Pages and Fan Pages of other non-profits and get their updates and announcements on Facebook and you'll pick it up. Or find a constituent/volunteer who's already "into it" and ask them to be a "virtual" volunteer leader of your Facebook presence to grow it organically. To learn more about Facebook pages, you can read [[Media:Facebook_Pages_Insider's_Guide.pdf|"The Insider's Guide."]]

The following is one organization's take on how to use Facebook:

Eleni Tsigas

Preeclampsia Foundation

"When you do a Facebook Ad, including Boosted Posts, you can run it to current fans or with an exception criteria that does not include your current Fans. That being said, I would hesitate to boost ANY post unless there was a specific drive/aim in us doing so. Boosting it just to get visibility with no call-to-action is not an effective use of money. Driving general Likes on the other hand, does serve us well and is worth the investment, though if you ever got to the point where you had exhausted potential clients, I would recommend that you take a break for some time.

In addition, Facebook (and social media in general) raises AWARENESS, not funds. Email marketing is much better suited for that purpose, and better yet, peer-to-peer requests. Facebook does, however, remind people of important things like "Oh, I should go register for a walk and start fundraising." People make the mistake of assuming it is a panacea instead of one more tool in the communication arsenal.”

*'''Causes''' 

Any Facebook users will be able to see all your NonProfit's Cause Pages in one place that looks like [https://apps.facebook.com/causes/ this]. But the NPO as an entity won't be able to manage relationships with these User-created Cause Pages without this approval from the Cause Application Company, Project Agape.

As an approved Partner, you'll be granted access to a different background ADMIN page that through a portal page that only organizations are be able to access. From there, you'll be able to "designate" which of all the Cause Pages out there is the "official" Cause Page of the organization from that ADMIN area. You can still need to create your own Cause page from the User side as a leader of the organization and then designate THAT one as the "official" Cause page. Or choose None as "official" and just receive donations as the chosen beneficiary of the multiple pages created to support your cause.

You'll also have options from your ADMIN area to "Manage Causes" and can "disassociate" any that you don't want to be associated with your Cause. You can also "Manage Donations," where you can see all your donors, download reports to add them to your donor database, have options for "thank them" using Facebook, etc. One point to be aware of: The official Causes Partner reports often list as Anonymous some contributions for which an individual donor is identified on the specific Cause page where the donation was made.(This depends on which box the donor checks at the time of the donation.) Unless you keep track of each associated Cause page, you will miss the opportunity to thank some donors who are identified on the individual Cause page but not on the Causes Partner reports. You can also administer Cause Petitions within your ADMIN area where you appeal for people to "sign" a collective petition advocating for some sort of change.

Then encourage any of your constituents who want to create their own Cause Page to do so and ALL of them can be set to "benefit" your 501(c)(3). Anyone can create a Cause page if they add the Cause application to their Facebook Profile. They can join lots of Causes and create multiple Cause pages for causes they care about. They "choose" who their Cause page will benefit from any nonprofit organization that is listed in [http://www.guidestar.org Guidestar database].

Then keep creating ways in your campaigns/appeals/advocacy alerts to give your constituents a way to viral your message to everyone on their Cause page with "canned" text/graphics/links back to page on your website and you've got a movement.
People always respond best to appeals made by people they know. Empower your constituents to be ambassadors of your messages. They get the experience of helping the cause they care about and have passion to share with others they know. You get people to reach more people with your appeals for the cause than you would ever reach in a top-down message delivery strategy.

More good information about Causes can be accessed from Facebook's [https://apps.facebook.com/causes/ Causes' FAQs] and [http://apps.facebook.com/causes/about?m=736620da here].

*'''Groups''' 

Facebook Group pages are very easy to create also, but are more like an open or closed online group meeting space. Doesn't
have near the tools for NPO communications and outreach and fundraising, but it has it functions. We have a group page for volunteers [http://www.facebook.com/groups.php?ref=sb#/group.php?gid=11572144041 here], but we haven't done a lot with it except let it grow and share "news" posts and links. It's still grown to over 600 in last year.

An idea for patient privacy is to open your group page only to those who have signed up as members of your Association.
Those who are NOT members, can be messaged as to their affiliation (I have a sister with this disease, my child has this disease…)
The message is sent by going to the inquirer's own FB page and clicking on SEND A MESSAGE.
It not only helps with patient privacy, but provides new members.

The only drawback to this system is if the person does not have the message ability
on their FB page when one goes to message them to ask their affiliation….

Also, there are sometimes patients who, for various reasons, start another FB page
on the same disease… these are usually not a big draw from the "official" disease page and
serve a purpose for their group. One can ask them to be a Friend, posting when
appropriate on these other pages, but not so often as to appear to be FB-stalking them.

* 10 Tips for Non-Profits on Facebook -
http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook

*'''Discussion following #deleteFacebook in 2018''' 

---"The HLRCC Family Alliance has wrestled with the use of the Facebook Group and other forums for some years.
We made the Facebook group secret which means that not only are posts private, but the member list is also. As it is not found by search people have to find it via the website and send an email to contact and receive an invitation to join. Or people can add family and Facebook friends.
We were finding nevertheless that there were limitations on long-term functionality with older posts being difficult to find if longer than a year or two old.
About three years ago an organisation called Smart Patients was started from a previous list forum called ACOR. It supports all medical conditions with a set of communities and we created one for HLRCC.The admin and IT support are second to none. We have encouraged the Facebook group to become members and about two thirds have 200 out of 300
The Facebook group continues but we have people in Smart Patients with no Facebook account so we have some cross communication issues."

---"I’m glad to see you mentioning Smart Patients. I recently joined Smart Patients because of a health condition with which I was diagnosed. From the patient perspective, it seems superbly run, though I know absolutely nothing about what happens behind the curtain. I recently heard something that stuck with me. It was on a NPR program about Facebook moving to a pay for service model. “If you’re not PAYING for the product, you ARE the product.” One concern I have about Smart Patients is that, like Facebook, it does share anonymized data with third parties without the consent of members: https://www.smartpatients.com/faq#what-is-smart-patients."

---"When I was in charge of social media for The XLH Network, Inc., I resisted creating a Facebook group, for all the reasons that are now being addressed -- concerns about privacy, even in a closed group; the lack of email addresses for our database (so we didn't "own" the membership -- Facebook did); and dividing up our community into a variety of platforms. I don't know for sure that it was the right decision, but at least it meant that the Network has always had an alternative to Facebook in place.

The Network started as a listserv, and then the membership transferred to a forum. Unfortunately, forums aren't as easy/convenient to use as Facebook (although they offer a lot of benefits, including being able to organize responses by topic, which makes them highly searchable, and you can collect a lot of advice on repeat topics over the years), so it's difficult to get engagement there. But at least the nonprofit retains ownership of the membership, which it doesn't have with any interactions on Facebook, .

Since we had a forum already, we didn't need a platform like SmartPatients or PatientsLikeMe.com, and creating accounts with them would have split our community even further (some at Facebook, some at the Network's forum and some at these other platforms). Personally, both of those options worry me in much the same way that Facebook does, since they're FOR-PROFIT entities, based on their dot-com URLs.

To some extent, in this day and age, it's necessary to split the community and offer a variety of platforms for discussion -- some people just won't use a forum and some just won't use Facebook, and so on. (We considered creating a Google group, but just didn't have the experienced personnel to monitor it, and all platforms need monitoring.) So the Network maintains a Facebook page, but encourages taking private discussion over at the forum.

Just to throw out another concern with Facebook -- a few months ago, some consultants started stalking our patient community on Facebook. I don't even know how they did it, because I wasn't able to duplicate their search results, but they were able to find out who on Facebook mentioned XLH in their PRIVATE timelines/profiles. The consultants then sent private messages to those people to ask them to participate in some research. At first, we thought they were scraping info from people who posted to the Network's page, which was bad enough, but it appeared to go beyond that, to people who had never posted to the page, but mentioned XLH in their private timelines. I still don't know how they did that, but it's worrisome."

---"Our Facebook group pre-dates the organization that I run. I am heavily invested in it, but it’s not under our organization. I think for now it will continue to be most appropriate for our condition. I see a lot of benefits to the FB platform for our patient families - the cross talk with groups for comorbidities and the ability to message and friend other families. I’ve learned a lot about other patients from what they post outside of the group, just seeing their everyday lives, that helps me as a caregiver and as an advocate. That is one thing that you would never get from a stand alone forum. That said, it’s pretty clear that Facebook doesn’t really care about group users and there are plenty of frustrating things about the features for groups.

I’ve set up Vanilla Forums for another organization:
https://vanillaforums.com/en/software/
We set up the self-hosted open source product, so it is free but has to be maintained. I think for most groups I’d recommend using their paid, hosted product though. It’s not cheap. I wonder if they may have some flexible pricing for non-profits though.

The Chordoma Foundation launched a community recently on this platform
https://personifycorp.com/small-world-community/
I’ve been curious about that but don’t know anymore than what they have publicized about it.

I signed up for SmartPatients to check it out and registered for a group (or tag in SP) for a brain condition relevant to our syndrome. I found it mildly glitchy (not terrible, but not thrilling either) and the group had seen very light use. I found that via tags in posts, I could access other conditions that I’m not sure I was supposed to be able to access. I think it could have potential, but it seemed like it may have lost momentum to me.

I think this is an interesting conversation, I’d love to see better platforms for our groups flower. But for us there’s not a strong need yet I think."

---"We have been struggling with this as well for several years now. The largest and most active private FB group for our patient community was started by a group of patients and is not administrated by us or any organization. From the very beginning I have been struggling to figure out community forum options because I never felt comfortable with a private FB group for all the reasons already stated here. So we did start a Smart patient community, but it hasn’t gotten the traction we had hoped.

We have discussed this often with the Genetic Alliance to see if there was a solution as part of the PEER platform. Since it is non profit and already has some strong privacy built into it, perhaps if enough of the groups on the PEER platform are interested it is something we could pursue.

Our other thought is to see if building out a private community forum from our CMS vendor is an option, so that we do have ownership of the members and can put privacy assurances into place. Has anyone gone this route?"

== SmartPatients ==

"About three years ago an organisation called Smart Patients was started from a previous list forum called ACOR. It supports all medical conditions with a set of communities and we created one for HLRCC.The admin and IT support are second to none. We have encouraged the Facebook group to become members and about two thirds have 200 out of 300 The Facebook group continues but we have people in Smart Patients with no Facebook account so we have some cross communication issues."

"I signed up for SmartPatients to check it out and registered for a group (or tag in SP) for a brain condition relevant to our syndrome. I found it mildly glitchy (not terrible, but not thrilling either) and the group had seen very light use. I found that via tags in posts, I could access other conditions that I’m not sure I was supposed to be able to access. I think it could have potential, but it seemed like it may have lost momentum to me."

"SmartPatients has the concept that all conversations of all communities are accessible instead of having a separate silo for each condition. People can be members of several communities and can follow tags that they are interested in. This means that for example information about a particular drug side effect can be found across conditions. It is very open to any suggestion for improvement via a Site Feedback tag. You will always get a personal reply."

==Twitter==

===Introduction===
Twitter is a social networking site that begins with the question, "What are you doing?" Twitter is much more streamlined than facebook; user profiles are limited to name, location and a 140 character bio. Twitter status updates or "tweets" are also limited to 140 characters. They can include links to outside sites but cannot included embedded photos, video or other content. Twitter users can upload a profile picture and [http://mashable.com/2009/05/23/twitter-backgrounds/ create a customized background] for their page but cannot make further customizations.

===Terminology===
'''Tweet''': A message/status update on Twitter of 140 characters or less.
 '''@''': Putting the @ sign before a twitter username (i.e. @geneticalliance) will create a link to that person's Twitter page within your tweet
 '''RT''' or '''Re-tweet''': When a user re-broadcasts a tweet written by someone else. These posts usually begin with "RT @twitteruser:" to give credit to the person who wrote the original tweet.
 '''List''': Twitter users can create lists of other users on any subject they like such as [http://twitter.com/jacobscure/non-profit-resources Non-profit Resources] or [http://twitter.com/jacobscure/rare-disease Rare Disease]. Other users can follow these lists, gaining attention for the person who created the list and saving them from having to do the leg work of finding and adding all the different users tweeting on that topic.
 '''Hashtag''' or '''#''': This is a way of denoting a keyword of conversation topic. The word after the hashtag is clickable and will bring you to a display of every other Tweet which contains the same hashtag. These can be used to create a meta-dialogue or to track the conversation about a certain topic. Sometimes groups will schedule chats on Twitter, which are identified by a specific hashtag. Users can join in the chat just by clicking on the hashtag or by using a third-party site such as [http://www.tweetchat.com Tweet Chat].

===Twitter Clients===
A Twitter client can often provide more features and functionality than the main website. Although your content still appears on Twitter, and is still subject to the same limitations, a small line underneath your post will let others know what client you are using; i.e. "via TweetDeck." Some clients allow you to manage more than one Twitter account from the same place, and many will also let you update Facebook, LinkedIn and other social media sites simultaneously. Some also allow you to schedule your tweets to post at a later time.

Here are some popular Twitter clients:
*[http://www.hootsuite.com Hoot Suite]
*[http://www.tweetdeck.com Tweet Deck]
*[http://www.tweetmeme.com Tweet Meme]

===Best Practices===
'''Follow people who follow you''' - If someone follows you, it is considered courteous to follow them back. If you are concerned that following too many people will clog up your Twitter stream, create a list of those most important to you so you don't miss out on anything they are saying.
 '''Re-tweet''' - It's that simple. If someone says something funny, interesting or thought-provoking, share it with your network. It's a great way to get them to notice you and maybe remember you the next time you want your own content re-tweeted. Always make sure to start a re-tweet with "RT @username:" Twitter doesn't do this automatically when you click the re-tweet button; if you just click the button, your RT won't show up in their @ feed, so you won't get credit for helping out!
 '''Get involved in the dialogue''' - Twitter is not a place for wallflowers. It's also not a place to constantly promote yourself or your brand. There is a place for that, but self-promotion should make up less than 10% of your tweets, on average. If you participate in the conversation and post content that is valuable to your followers, you will form lasting relationships which can translate to valuable partnerships on the web and in the real world.

Read the article, [http://www.openforum.com/idea-hub/topics/lifestyle/article/when-tweets-go-wrong-and-how-to-do-it-right-jean-chatzky?cid=em-smartbrief When Tweets Go Wrong - And How to Do it Right] to learn about how a company handled its mistake and for more tips.

==Discussion Forums==
===Teen Discussion Forum===
Teen discussion forums are online discussion sites for teenagers to share their stories and experiences with one another. People participating in the forum may cultivate social bonds and interest groups from a topic made from the discussions. Since participating teenagers will most likely be underage, it will require a different set of development and maintenance methods than the ones used for a regular discussion forum. Here are several issues to consider:

'''Who would be the administrator for such a site?

An administrator is necessary for two reasons:
*Kids might end up inadvertently submitting incorrect medical information that could then go viral
*There is the risk of improper posts (sexual, harassing, flaming content…)

'''Should a Listserv or a chat area be offered?

Again, both would require supervision and the time and effort of a staff member.

'''What other issues do I need to look out for?

There is a great deal of liability involved when dealing with any activity including minors. Some cyber insurance would not cover such an undertaking – at least not without resistance and a costly rider.

==How do I keep up?==

Tips provided by Jim Moore

'''Facebook'''

I did several things to keep track of FB activity—this is my plan. If it doesn’t work for you, please ignore it:

# Regular searches for new groups and pages. Use the same search engine word strings you’d use on Google and mix them up. You will find them.
# Join the groups...and be forthright about who you are.
##If the groups refuse to admit you, infiltrate with another volunteer who is “just a parent.” Don’t use official organization reps for this. Just pick a “friend” you trust who’s not on the board or a committee, etc. and have them join.
# Turn on “notifications” for each group. Turn on “email” in your notifications settings. Select ALL posts to the group for notifications.
## Prepare for a deluge of email notifications.
##Note that threads have “subject” lines, so if a thread does not pertain, sort by subject and delete the whole lot of ‘em.
#Skim ALL subject matter looking for “opportunities.” (Prioritize to those message threads where real expertise is required.) I define opportunity as:
##Newbie looking for solid info;
##Misinformation;
##“I dunnos”
##And so on.
##Above all, wait for “critical mass” to build in the message thread. If you respond to the initial post, only the questioner will see it. Wait until 15 or 20 people have chimed in and then drop it on ‘em. Thread participants will ALL get a notification of another post to the thread, and they’ll all benefit...and from an organizational marketing point of view, they will all see your organization in action at its best. (obvious exception would be for a critical item where time is of the essence...e.g. prenatal diagnosis or life-threatening situation or “the meeting at the school is tomorrow!”)
#Generate boilerplate. Nothing is more time-consuming than writing the same thing over and over again, and freelancing every response introduces the opportunity for mistakes and omissions.
## Remember: there are really only 10 to 20 questions – asked over and over again – perhaps many permutations, but the right guidance is still the right guidance.
##Create a library of boilerplate by subject.
##Save them in MS Word or similar so you can just open the file, copy and paste.
##Embed links to info on your website prolifically. Drag them to your organization, and use the boilerplate as a preamble to say “find this here and find that there.”
###My philosophy is to never simply hand it to them. Instead, act like a library and have them come and get it. This way, they learn about the library, and they know to come to the library next time they have a question.
##Disclose that it’s boilerplate with a custom intro such as, “[Name], We have guidance on this subject. This is a far more comprehensive response that your answer may require, but you may find it helpful. You may wish to save this for future reference. [insert boilerplate]. At the end of each boilerplate response, remind the reader that it’s boilerplate and point them to where they can find more info.
##Name the files “boilerplate-[subject}” so you can find them using Windows Explorer search tools.
##Keep the boilerplate up-to-date. This is more work than it might seem, because most boilerplate ends up littered with hyperlinks to docs on your site and elsewhere, and much of the baseline guidance needs regular review.
##Don’t be afraid to be comprehensive. I always got rave reviews on the boilerplate and many “secondary” thank-yous from other readers in the thread.
#Be strategic. Don’t “helicopter.” Respect the group and just “show up big time” when it really counts.
#ASK PERMISSION: before posting things like events, research recruitment, fundraising and so on. Most will be accommodating, but if they say “no fundraising” or “just the specific variation we serve”, it’s their group.
#DEBATE: inevitably you’ll encounter some preposterous nonsense or another that can’t be ignored. Debate vigorously but respectfully, and then TRUST THE AUDIENCE to know the difference between nonsense and solid info. Your debate “opponent” will never admit being wrong or admit “defeat,” so that’s not a goal. Make your points well and respectfully, then walk away. (easier said than done sometimes, and this is NOT my forte’) J.

You just read all that. I don’t have to tell you that it’s tons of work. But so is a conference, creating a website, publishing booklets and so on. This is currently where the people are (social media), and you need to go to where the people are and meet them on their turf.

Get help. If you have several volunteers you truly trust, give them your login. Yes, let them impersonate you....within strict guidelines. This is the beauty of boilerplate. The words are tried and true...vetted. Your surrogates are just that...clones who have strict marching orders. And because they are using “your” accounts and memberships, you can see everything they do as they do it. Supervise and train. It will pay off quickly and give you time to focus on other things while still having a huge (or in today’s political vernacular Yuuuuge!) social media presence.

'''Twitter'''

Twitter is even bigger than this, and it involves lots of one-on-one engagement to build followers and pay your dues with those followers. Suffice it to say that Twitter is all about mutual back scratching. I’ll reserve that for another time.

'''Use Multiple Social Media Profiles'''

If you are using your personal profile, the one with photos of your cat and thoughts on the upcoming election, stop. You’re bound to alienate lots of people with your “other” posts.

Your organization profile should be utterly bland on every front other than the organization’s mission.

Create a new, organization-specific profile and use it exclusively for the organization’s messages. Then create a second profile in case Facebook gives you a “time out” for misbehavior of some sort. (too many friend requests, too many duplicate posts to too many groups, etc.) I have two professional profiles:
#First Name Last Name
#First Name Executive Director
They are otherwise identical in virtually every way, so readers really can’t tell one from the other.

How to develop a “split-Facebook-personality.” This “boilerplate” was written to guide people who are concerned about privacy to create unique profiles to use exclusively for the condition groups. But the principles are the same in terms of creating your professional profile for the organization: http://www.genetic.org/Portals/0/Public/Docs/Protect%20Your%20Privacy%20with%20Multiple%20Facebook%20Accounts.pdf

Using these methods, I was able to actively participate in approximately 25 Facebook groups worldwide (including 4 condition-specific groups where I was admin), multiple Facebook pages, and 3 Twitter feeds with thousands of followers.
I used “push” tools in Constant Contact to push content to the pages and Twitter, and then I relayed that content to “friendly” groups worldwide. All of that content was very easy to distribute, and the degree to which it was welcomed was directly related to the relationships developed with the other independent groups’ admins.

==Recommended Links==

*[http://www.casefoundation.org/social-media-tutorials The Case Foundation's Social Media Tutorials]
*[http://www.cdc.gov/healthcommunication/ToolsTemplates/SocialMediaToolkit_BM.pdf?s_cid=tw_eh_135 CDC's Health Communicator's Social Media Toolkit]
*[http://www.youtube.com/t/ngo_tips YouTube Tips for NGOs]
*[http://ow.ly/35h1M Social Media: Tips and Tricks.]
*[http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook/ 10 Tips for Non-Profits on Facebook]
*[http://www.blogtips.org/ Blog Tips for Non-Profits]

If you would like to see examples of social media pages, visit Genetic Alliance's pages:

*[http://www.facebook.com/group.php?gid=15453400385&ref=ts http://www.facebook.com/group.php?gid=15453400385&ref=ts]

*[http://www.linkedin.com/companies/genetic-alliance http://www.linkedin.com/companies/genetic-alliance]

*[http://twitter.com/geneticalliance http://twitter.com/geneticalliance]

*[http://www.youtube.com/geneticalliance http://www.youtube.com/geneticalliance]

== Questions and Answers ==

*'''''How has your organization responded to requests from families who want to start a group on Facebook? Is it better to start one as an organization in order to keep control?'''''
** We did start our own Facebook Group and Cause so that we would have some control. We have raised a couple hundred dollars on the site (with literally no work).
**We have a Facebook Causes page and our members have their own Facebook pages. Then they can join our Facebook cause and leave comments and such on the cause page and information on their own pages.
**I think there are several issues to think about here. One is whether you can show up on every blog, online group, MySpace or Facebook venue. I think they are just going to proliferate & at some point you can't control the space/content/representation. The terms and conditions of these online spaces are widely variable. In some everything that's shared/written becomes the property of the sponsor who can edit, use, re-publish or use for publicity. There is no privacy, no ownership, no accountability. Though they seem like "safe spaces", many of them are filled with both spammers and porn folks. Also, many sites are searchable by google or other search engines. Cyberspace is notoriously hard to control, if control is a top priority of the organization. That too requires an investment to maintain. On the other hand, presidential candidates have gotten elected recently using these social networking tools successfully and raised $500 million online, largely from people giving $100 or less.

*'''''What happens if other Facebook Groups or Causes exist for the same condition as mine?'''''
:We as an organization (Cystinosis Research Network) started a Facebook cause (which was very straightforward to do) under the title "Cystinosis". We've raised a few hundred dollars and have had nearly 1,000 join the cause with almost no effort.

:We've recently run across another cause for cystinosis which was started by someone we aren't familiar with. Donations are going to the other advocacy group in the U.S., which is fine, except he used our logo, website address and vision and mission information. I've "facebooked" the cause administrator just to point out the inconsistency and the confusion it might provide for possible donors with no response back.

:Finally, one of our medical advisory board members decided to start a CRN Facebook cause herself, as she didn't find CRN when she searched (our fault, should have titled our cause "CRN" specifically, not the general "cystinosis"). Donations from her cause go to CRN, and frankly, she did a much nicer job than us in setting it up! We've decided that having the two sites is complimentary in the end.

:I guess my point is that Facebook is a fairly uncontrolled space, putting your organization as a cause can provide very easily collected modest donations and raise awareness, but there is always the possibility (as in many situations, I suppose, like blogs, etc.) where other individuals can use information from your organization without your knowledge, which may or may not lead to any significant misunderstandings or harm.

*'''''How does a group go about getting permission to use photos from conferences on social media websites and in enewsletters? Additionally, if photos are used on Facebook, how does 'liking', 'sharing', and 'tagging' interact with privacy violations?'''''

:*Team Sanfilippo has a Facebook page and a private MPS community page as well. We have put posts up on occasion asking permission and parents have responded in several ways. Some have said use whatever you see online of my child, others have sent us a few pictures and and some have said to take anything from their child's personal site we want. So we print those threads out in case of an issue down the road. We've never run into any issues so far.
:*We have a photo/video release at our conferences that we ask families to sign, which basically is a waiver for any electronic or print distribution. However, sometimes families just send us photos via email, etc., to be used in our newsletter and don’t necessarily provide a formal release. For many years before we had an electronic newsletter, the pictures were used in our print newsletter. However, we have now decided to implement a policy wherein we obtain a formal release for use of any photos submitted by any mechanisms. I do have to make the disclaimer that we try not to identify any minor by name in photos. We do have a FB page, and we have “turned off” the ability for anyone other than the administrator to upload photos and our policy is not to upload any photos organizationally of patients. We also have a private password protected online community which does allow the user to upload pictures to their personal page. The community use agreement contains a disclaimer to the effect that although the site is private and password protected, we are not responsible for and cannot protect against the potential use of the photos outside the online community (because a member copies it and uses it elsewhere).

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Blogging]]
*[[Building a Website]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[People and Roles]]
*[[Recruiting]]
**[[Publicity and General Media]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Taking Credit Cards on the Web]]

Social Networking

2018-07-30T20:39:34Z

Aguise: /* Where do I start? */

Social networking sites have seen a dramatic increase in popularity, leaving many advocacy organizations wondering the best way to engage with and integrate this technology into their organizations. Information on [http://www.facebook.com Facebook] is shared below, but feel free to help us expand and include information on other social networking sites, such as [http://www.myspace.com MySpace] and [http://www.twitter.com Twitter].

Social media can be a very useful tool for interacting with your community. Many organizations use social media (e.g. Twitter, Facebook and others) as a broadcast communication tool, updating their community and thepublic about progress or new developments with their registry or biobank. This is just the beginning. Social media can also be used strategically to listen to and engage with your community. [http://www.slideshare.net/Radian6/30-ideas-for-your-2012-social-media-plan Radian6] has created a wonderful resource, 30 ideas for your social media plan in 2012 that provides insight on how to use social media more effectively. Once your social media plan is in place, be sure to [http://blog.kissmetrics.com/science-of-social-timing-1 time your posts] for when your audience is most likely to be listening.

== Facebook ==
=== Where do I start? ===

Facebook has many different ways to be involved as an organization, such as Causes and Groups. It might be easiest to just start with your own personal profile so you understand what your constituents are seeing from the user side. "Friend them,"
watch their behavior, what attracts, what doesn't, join Cause Pages and Fan Pages of other non-profits and get their updates and announcements on Facebook and you'll pick it up. Or find a constituent/volunteer who's already "into it" and ask them to be a "virtual" volunteer leader of your Facebook presence to grow it organically. To learn more about Facebook pages, you can read [[Media:Facebook_Pages_Insider's_Guide.pdf|"The Insider's Guide."]]

The following is one organization's take on how to use Facebook:

Eleni Tsigas

Preeclampsia Foundation

"When you do a Facebook Ad, including Boosted Posts, you can run it to current fans or with an exception criteria that does not include your current Fans. That being said, I would hesitate to boost ANY post unless there was a specific drive/aim in us doing so. Boosting it just to get visibility with no call-to-action is not an effective use of money. Driving general Likes on the other hand, does serve us well and is worth the investment, though if you ever got to the point where you had exhausted potential clients, I would recommend that you take a break for some time.

In addition, Facebook (and social media in general) raises AWARENESS, not funds. Email marketing is much better suited for that purpose, and better yet, peer-to-peer requests. Facebook does, however, remind people of important things like "Oh, I should go register for a walk and start fundraising." People make the mistake of assuming it is a panacea instead of one more tool in the communication arsenal.”

*'''Causes''' 

To become Causes NonProfit Partner, visit [http://nten.org/uploads/09ntc/presentations/Welcome%20to%20Causes%20NPO.pdf here]. Any Facebook users will be able to see all your NonProfit's Cause Pages in one place that looks like [https://apps.facebook.com/causes/ this]. But the NPO as an entity won't be able to manage relationships with these User-created Cause Pages without this approval from the Cause Application Company, Project Agape.

As an approved Partner, you'll be granted access to a different background ADMIN page that through a portal page that only organizations are be able to access. From there, you'll be able to "designate" which of all the Cause Pages out there is the "official" Cause Page of the organization from that ADMIN area. You can still need to create your own Cause page from the User side as a leader of the organization and then designate THAT one as the "official" Cause page. Or choose None as "official" and just receive donations as the chosen beneficiary of the multiple pages created to support your cause.

You'll also have options from your ADMIN area to "Manage Causes" and can "disassociate" any that you don't want to be associated with your Cause. You can also "Manage Donations," where you can see all your donors, download reports to add them to your donor database, have options for "thank them" using Facebook, etc. One point to be aware of: The official Causes Partner reports often list as Anonymous some contributions for which an individual donor is identified on the specific Cause page where the donation was made.(This depends on which box the donor checks at the time of the donation.) Unless you keep track of each associated Cause page, you will miss the opportunity to thank some donors who are identified on the individual Cause page but not on the Causes Partner reports. You can also administer Cause Petitions within your ADMIN area where you appeal for people to "sign" a collective petition advocating for some sort of change.

Then encourage any of your constituents who want to create their own Cause Page to do so and ALL of them can be set to "benefit" your 501(c)(3). Anyone can create a Cause page if they add the Cause application to their Facebook Profile. They can join lots of Causes and create multiple Cause pages for causes they care about. They "choose" who their Cause page will benefit from any nonprofit organization that is listed in [http://www.guidestar.org Guidestar database].

Then keep creating ways in your campaigns/appeals/advocacy alerts to give your constituents a way to viral your message to everyone on their Cause page with "canned" text/graphics/links back to page on your website and you've got a movement.
People always respond best to appeals made by people they know. Empower your constituents to be ambassadors of your messages. They get the experience of helping the cause they care about and have passion to share with others they know. You get people to reach more people with your appeals for the cause than you would ever reach in a top-down message delivery strategy.

More good information about Causes can be accessed from Facebook's [https://apps.facebook.com/causes/ Causes' FAQs] and [http://apps.facebook.com/causes/about?m=736620da here].

*'''Groups''' 

Facebook Group pages are very easy to create also, but are more like an open or closed online group meeting space. Doesn't
have near the tools for NPO communications and outreach and fundraising, but it has it functions. We have a group page for volunteers [http://www.facebook.com/groups.php?ref=sb#/group.php?gid=11572144041 here], but we haven't done a lot with it except let it grow and share "news" posts and links. It's still grown to over 600 in last year.

An idea for patient privacy is to open your group page only to those who have signed up as members of your Association.
Those who are NOT members, can be messaged as to their affiliation (I have a sister with this disease, my child has this disease…)
The message is sent by going to the inquirer's own FB page and clicking on SEND A MESSAGE.
It not only helps with patient privacy, but provides new members.

The only drawback to this system is if the person does not have the message ability
on their FB page when one goes to message them to ask their affiliation….

Also, there are sometimes patients who, for various reasons, start another FB page
on the same disease… these are usually not a big draw from the "official" disease page and
serve a purpose for their group. One can ask them to be a Friend, posting when
appropriate on these other pages, but not so often as to appear to be FB-stalking them.

* 10 Tips for Non-Profits on Facebook -
http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook

*'''Discussion following #deleteFacebook in 2018''' 

---"The HLRCC Family Alliance has wrestled with the use of the Facebook Group and other forums for some years.
We made the Facebook group secret which means that not only are posts private, but the member list is also. As it is not found by search people have to find it via the website and send an email to contact and receive an invitation to join. Or people can add family and Facebook friends.
We were finding nevertheless that there were limitations on long-term functionality with older posts being difficult to find if longer than a year or two old.
About three years ago an organisation called Smart Patients was started from a previous list forum called ACOR. It supports all medical conditions with a set of communities and we created one for HLRCC.The admin and IT support are second to none. We have encouraged the Facebook group to become members and about two thirds have 200 out of 300
The Facebook group continues but we have people in Smart Patients with no Facebook account so we have some cross communication issues."

---"I’m glad to see you mentioning Smart Patients. I recently joined Smart Patients because of a health condition with which I was diagnosed. From the patient perspective, it seems superbly run, though I know absolutely nothing about what happens behind the curtain. I recently heard something that stuck with me. It was on a NPR program about Facebook moving to a pay for service model. “If you’re not PAYING for the product, you ARE the product.” One concern I have about Smart Patients is that, like Facebook, it does share anonymized data with third parties without the consent of members: https://www.smartpatients.com/faq#what-is-smart-patients."

---"When I was in charge of social media for The XLH Network, Inc., I resisted creating a Facebook group, for all the reasons that are now being addressed -- concerns about privacy, even in a closed group; the lack of email addresses for our database (so we didn't "own" the membership -- Facebook did); and dividing up our community into a variety of platforms. I don't know for sure that it was the right decision, but at least it meant that the Network has always had an alternative to Facebook in place.

The Network started as a listserv, and then the membership transferred to a forum. Unfortunately, forums aren't as easy/convenient to use as Facebook (although they offer a lot of benefits, including being able to organize responses by topic, which makes them highly searchable, and you can collect a lot of advice on repeat topics over the years), so it's difficult to get engagement there. But at least the nonprofit retains ownership of the membership, which it doesn't have with any interactions on Facebook, .

Since we had a forum already, we didn't need a platform like SmartPatients or PatientsLikeMe.com, and creating accounts with them would have split our community even further (some at Facebook, some at the Network's forum and some at these other platforms). Personally, both of those options worry me in much the same way that Facebook does, since they're FOR-PROFIT entities, based on their dot-com URLs.

To some extent, in this day and age, it's necessary to split the community and offer a variety of platforms for discussion -- some people just won't use a forum and some just won't use Facebook, and so on. (We considered creating a Google group, but just didn't have the experienced personnel to monitor it, and all platforms need monitoring.) So the Network maintains a Facebook page, but encourages taking private discussion over at the forum.

Just to throw out another concern with Facebook -- a few months ago, some consultants started stalking our patient community on Facebook. I don't even know how they did it, because I wasn't able to duplicate their search results, but they were able to find out who on Facebook mentioned XLH in their PRIVATE timelines/profiles. The consultants then sent private messages to those people to ask them to participate in some research. At first, we thought they were scraping info from people who posted to the Network's page, which was bad enough, but it appeared to go beyond that, to people who had never posted to the page, but mentioned XLH in their private timelines. I still don't know how they did that, but it's worrisome."

---"Our Facebook group pre-dates the organization that I run. I am heavily invested in it, but it’s not under our organization. I think for now it will continue to be most appropriate for our condition. I see a lot of benefits to the FB platform for our patient families - the cross talk with groups for comorbidities and the ability to message and friend other families. I’ve learned a lot about other patients from what they post outside of the group, just seeing their everyday lives, that helps me as a caregiver and as an advocate. That is one thing that you would never get from a stand alone forum. That said, it’s pretty clear that Facebook doesn’t really care about group users and there are plenty of frustrating things about the features for groups.

I’ve set up Vanilla Forums for another organization:
https://vanillaforums.com/en/software/
We set up the self-hosted open source product, so it is free but has to be maintained. I think for most groups I’d recommend using their paid, hosted product though. It’s not cheap. I wonder if they may have some flexible pricing for non-profits though.

The Chordoma Foundation launched a community recently on this platform
https://personifycorp.com/small-world-community/
I’ve been curious about that but don’t know anymore than what they have publicized about it.

I signed up for SmartPatients to check it out and registered for a group (or tag in SP) for a brain condition relevant to our syndrome. I found it mildly glitchy (not terrible, but not thrilling either) and the group had seen very light use. I found that via tags in posts, I could access other conditions that I’m not sure I was supposed to be able to access. I think it could have potential, but it seemed like it may have lost momentum to me.

I think this is an interesting conversation, I’d love to see better platforms for our groups flower. But for us there’s not a strong need yet I think."

---"We have been struggling with this as well for several years now. The largest and most active private FB group for our patient community was started by a group of patients and is not administrated by us or any organization. From the very beginning I have been struggling to figure out community forum options because I never felt comfortable with a private FB group for all the reasons already stated here. So we did start a Smart patient community, but it hasn’t gotten the traction we had hoped.

We have discussed this often with the Genetic Alliance to see if there was a solution as part of the PEER platform. Since it is non profit and already has some strong privacy built into it, perhaps if enough of the groups on the PEER platform are interested it is something we could pursue.

Our other thought is to see if building out a private community forum from our CMS vendor is an option, so that we do have ownership of the members and can put privacy assurances into place. Has anyone gone this route?"

== SmartPatients ==

"About three years ago an organisation called Smart Patients was started from a previous list forum called ACOR. It supports all medical conditions with a set of communities and we created one for HLRCC.The admin and IT support are second to none. We have encouraged the Facebook group to become members and about two thirds have 200 out of 300 The Facebook group continues but we have people in Smart Patients with no Facebook account so we have some cross communication issues."

"I signed up for SmartPatients to check it out and registered for a group (or tag in SP) for a brain condition relevant to our syndrome. I found it mildly glitchy (not terrible, but not thrilling either) and the group had seen very light use. I found that via tags in posts, I could access other conditions that I’m not sure I was supposed to be able to access. I think it could have potential, but it seemed like it may have lost momentum to me."

"SmartPatients has the concept that all conversations of all communities are accessible instead of having a separate silo for each condition. People can be members of several communities and can follow tags that they are interested in. This means that for example information about a particular drug side effect can be found across conditions. It is very open to any suggestion for improvement via a Site Feedback tag. You will always get a personal reply."

==Twitter==

===Introduction===
Twitter is a social networking site that begins with the question, "What are you doing?" Twitter is much more streamlined than facebook; user profiles are limited to name, location and a 140 character bio. Twitter status updates or "tweets" are also limited to 140 characters. They can include links to outside sites but cannot included embedded photos, video or other content. Twitter users can upload a profile picture and [http://mashable.com/2009/05/23/twitter-backgrounds/ create a customized background] for their page but cannot make further customizations.

===Terminology===
'''Tweet''': A message/status update on Twitter of 140 characters or less.
 '''@''': Putting the @ sign before a twitter username (i.e. @geneticalliance) will create a link to that person's Twitter page within your tweet
 '''RT''' or '''Re-tweet''': When a user re-broadcasts a tweet written by someone else. These posts usually begin with "RT @twitteruser:" to give credit to the person who wrote the original tweet.
 '''List''': Twitter users can create lists of other users on any subject they like such as [http://twitter.com/jacobscure/non-profit-resources Non-profit Resources] or [http://twitter.com/jacobscure/rare-disease Rare Disease]. Other users can follow these lists, gaining attention for the person who created the list and saving them from having to do the leg work of finding and adding all the different users tweeting on that topic.
 '''Hashtag''' or '''#''': This is a way of denoting a keyword of conversation topic. The word after the hashtag is clickable and will bring you to a display of every other Tweet which contains the same hashtag. These can be used to create a meta-dialogue or to track the conversation about a certain topic. Sometimes groups will schedule chats on Twitter, which are identified by a specific hashtag. Users can join in the chat just by clicking on the hashtag or by using a third-party site such as [http://www.tweetchat.com Tweet Chat].

===Twitter Clients===
A Twitter client can often provide more features and functionality than the main website. Although your content still appears on Twitter, and is still subject to the same limitations, a small line underneath your post will let others know what client you are using; i.e. "via TweetDeck." Some clients allow you to manage more than one Twitter account from the same place, and many will also let you update Facebook, LinkedIn and other social media sites simultaneously. Some also allow you to schedule your tweets to post at a later time.

Here are some popular Twitter clients:
*[http://www.hootsuite.com Hoot Suite]
*[http://www.tweetdeck.com Tweet Deck]
*[http://www.tweetmeme.com Tweet Meme]

===Best Practices===
'''Follow people who follow you''' - If someone follows you, it is considered courteous to follow them back. If you are concerned that following too many people will clog up your Twitter stream, create a list of those most important to you so you don't miss out on anything they are saying.
 '''Re-tweet''' - It's that simple. If someone says something funny, interesting or thought-provoking, share it with your network. It's a great way to get them to notice you and maybe remember you the next time you want your own content re-tweeted. Always make sure to start a re-tweet with "RT @username:" Twitter doesn't do this automatically when you click the re-tweet button; if you just click the button, your RT won't show up in their @ feed, so you won't get credit for helping out!
 '''Get involved in the dialogue''' - Twitter is not a place for wallflowers. It's also not a place to constantly promote yourself or your brand. There is a place for that, but self-promotion should make up less than 10% of your tweets, on average. If you participate in the conversation and post content that is valuable to your followers, you will form lasting relationships which can translate to valuable partnerships on the web and in the real world.

Read the article, [http://www.openforum.com/idea-hub/topics/lifestyle/article/when-tweets-go-wrong-and-how-to-do-it-right-jean-chatzky?cid=em-smartbrief When Tweets Go Wrong - And How to Do it Right] to learn about how a company handled its mistake and for more tips.

==Discussion Forums==
===Teen Discussion Forum===
Teen discussion forums are online discussion sites for teenagers to share their stories and experiences with one another. People participating in the forum may cultivate social bonds and interest groups from a topic made from the discussions. Since participating teenagers will most likely be underage, it will require a different set of development and maintenance methods than the ones used for a regular discussion forum. Here are several issues to consider:

'''Who would be the administrator for such a site?

An administrator is necessary for two reasons:
*Kids might end up inadvertently submitting incorrect medical information that could then go viral
*There is the risk of improper posts (sexual, harassing, flaming content…)

'''Should a Listserv or a chat area be offered?

Again, both would require supervision and the time and effort of a staff member.

'''What other issues do I need to look out for?

There is a great deal of liability involved when dealing with any activity including minors. Some cyber insurance would not cover such an undertaking – at least not without resistance and a costly rider.

==How do I keep up?==

Tips provided by Jim Moore

'''Facebook'''

I did several things to keep track of FB activity—this is my plan. If it doesn’t work for you, please ignore it:

# Regular searches for new groups and pages. Use the same search engine word strings you’d use on Google and mix them up. You will find them.
# Join the groups...and be forthright about who you are.
##If the groups refuse to admit you, infiltrate with another volunteer who is “just a parent.” Don’t use official organization reps for this. Just pick a “friend” you trust who’s not on the board or a committee, etc. and have them join.
# Turn on “notifications” for each group. Turn on “email” in your notifications settings. Select ALL posts to the group for notifications.
## Prepare for a deluge of email notifications.
##Note that threads have “subject” lines, so if a thread does not pertain, sort by subject and delete the whole lot of ‘em.
#Skim ALL subject matter looking for “opportunities.” (Prioritize to those message threads where real expertise is required.) I define opportunity as:
##Newbie looking for solid info;
##Misinformation;
##“I dunnos”
##And so on.
##Above all, wait for “critical mass” to build in the message thread. If you respond to the initial post, only the questioner will see it. Wait until 15 or 20 people have chimed in and then drop it on ‘em. Thread participants will ALL get a notification of another post to the thread, and they’ll all benefit...and from an organizational marketing point of view, they will all see your organization in action at its best. (obvious exception would be for a critical item where time is of the essence...e.g. prenatal diagnosis or life-threatening situation or “the meeting at the school is tomorrow!”)
#Generate boilerplate. Nothing is more time-consuming than writing the same thing over and over again, and freelancing every response introduces the opportunity for mistakes and omissions.
## Remember: there are really only 10 to 20 questions – asked over and over again – perhaps many permutations, but the right guidance is still the right guidance.
##Create a library of boilerplate by subject.
##Save them in MS Word or similar so you can just open the file, copy and paste.
##Embed links to info on your website prolifically. Drag them to your organization, and use the boilerplate as a preamble to say “find this here and find that there.”
###My philosophy is to never simply hand it to them. Instead, act like a library and have them come and get it. This way, they learn about the library, and they know to come to the library next time they have a question.
##Disclose that it’s boilerplate with a custom intro such as, “[Name], We have guidance on this subject. This is a far more comprehensive response that your answer may require, but you may find it helpful. You may wish to save this for future reference. [insert boilerplate]. At the end of each boilerplate response, remind the reader that it’s boilerplate and point them to where they can find more info.
##Name the files “boilerplate-[subject}” so you can find them using Windows Explorer search tools.
##Keep the boilerplate up-to-date. This is more work than it might seem, because most boilerplate ends up littered with hyperlinks to docs on your site and elsewhere, and much of the baseline guidance needs regular review.
##Don’t be afraid to be comprehensive. I always got rave reviews on the boilerplate and many “secondary” thank-yous from other readers in the thread.
#Be strategic. Don’t “helicopter.” Respect the group and just “show up big time” when it really counts.
#ASK PERMISSION: before posting things like events, research recruitment, fundraising and so on. Most will be accommodating, but if they say “no fundraising” or “just the specific variation we serve”, it’s their group.
#DEBATE: inevitably you’ll encounter some preposterous nonsense or another that can’t be ignored. Debate vigorously but respectfully, and then TRUST THE AUDIENCE to know the difference between nonsense and solid info. Your debate “opponent” will never admit being wrong or admit “defeat,” so that’s not a goal. Make your points well and respectfully, then walk away. (easier said than done sometimes, and this is NOT my forte’) J.

You just read all that. I don’t have to tell you that it’s tons of work. But so is a conference, creating a website, publishing booklets and so on. This is currently where the people are (social media), and you need to go to where the people are and meet them on their turf.

Get help. If you have several volunteers you truly trust, give them your login. Yes, let them impersonate you....within strict guidelines. This is the beauty of boilerplate. The words are tried and true...vetted. Your surrogates are just that...clones who have strict marching orders. And because they are using “your” accounts and memberships, you can see everything they do as they do it. Supervise and train. It will pay off quickly and give you time to focus on other things while still having a huge (or in today’s political vernacular Yuuuuge!) social media presence.

'''Twitter'''

Twitter is even bigger than this, and it involves lots of one-on-one engagement to build followers and pay your dues with those followers. Suffice it to say that Twitter is all about mutual back scratching. I’ll reserve that for another time.

'''Use Multiple Social Media Profiles'''

If you are using your personal profile, the one with photos of your cat and thoughts on the upcoming election, stop. You’re bound to alienate lots of people with your “other” posts.

Your organization profile should be utterly bland on every front other than the organization’s mission.

Create a new, organization-specific profile and use it exclusively for the organization’s messages. Then create a second profile in case Facebook gives you a “time out” for misbehavior of some sort. (too many friend requests, too many duplicate posts to too many groups, etc.) I have two professional profiles:
#First Name Last Name
#First Name Executive Director
They are otherwise identical in virtually every way, so readers really can’t tell one from the other.

How to develop a “split-Facebook-personality.” This “boilerplate” was written to guide people who are concerned about privacy to create unique profiles to use exclusively for the condition groups. But the principles are the same in terms of creating your professional profile for the organization: http://www.genetic.org/Portals/0/Public/Docs/Protect%20Your%20Privacy%20with%20Multiple%20Facebook%20Accounts.pdf

Using these methods, I was able to actively participate in approximately 25 Facebook groups worldwide (including 4 condition-specific groups where I was admin), multiple Facebook pages, and 3 Twitter feeds with thousands of followers.
I used “push” tools in Constant Contact to push content to the pages and Twitter, and then I relayed that content to “friendly” groups worldwide. All of that content was very easy to distribute, and the degree to which it was welcomed was directly related to the relationships developed with the other independent groups’ admins.

==Recommended Links==

*[http://www.casefoundation.org/social-media-tutorials The Case Foundation's Social Media Tutorials]
*[http://www.cdc.gov/healthcommunication/ToolsTemplates/SocialMediaToolkit_BM.pdf?s_cid=tw_eh_135 CDC's Health Communicator's Social Media Toolkit]
*[http://www.youtube.com/t/ngo_tips YouTube Tips for NGOs]
*[http://ow.ly/35h1M Social Media: Tips and Tricks.]
*[http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook/ 10 Tips for Non-Profits on Facebook]
*[http://www.blogtips.org/ Blog Tips for Non-Profits]

If you would like to see examples of social media pages, visit Genetic Alliance's pages:

*[http://www.facebook.com/group.php?gid=15453400385&ref=ts http://www.facebook.com/group.php?gid=15453400385&ref=ts]

*[http://www.linkedin.com/companies/genetic-alliance http://www.linkedin.com/companies/genetic-alliance]

*[http://twitter.com/geneticalliance http://twitter.com/geneticalliance]

*[http://www.youtube.com/geneticalliance http://www.youtube.com/geneticalliance]

== Questions and Answers ==

*'''''How has your organization responded to requests from families who want to start a group on Facebook? Is it better to start one as an organization in order to keep control?'''''
** We did start our own Facebook Group and Cause so that we would have some control. We have raised a couple hundred dollars on the site (with literally no work).
**We have a Facebook Causes page and our members have their own Facebook pages. Then they can join our Facebook cause and leave comments and such on the cause page and information on their own pages.
**I think there are several issues to think about here. One is whether you can show up on every blog, online group, MySpace or Facebook venue. I think they are just going to proliferate & at some point you can't control the space/content/representation. The terms and conditions of these online spaces are widely variable. In some everything that's shared/written becomes the property of the sponsor who can edit, use, re-publish or use for publicity. There is no privacy, no ownership, no accountability. Though they seem like "safe spaces", many of them are filled with both spammers and porn folks. Also, many sites are searchable by google or other search engines. Cyberspace is notoriously hard to control, if control is a top priority of the organization. That too requires an investment to maintain. On the other hand, presidential candidates have gotten elected recently using these social networking tools successfully and raised $500 million online, largely from people giving $100 or less.

*'''''What happens if other Facebook Groups or Causes exist for the same condition as mine?'''''
:We as an organization (Cystinosis Research Network) started a Facebook cause (which was very straightforward to do) under the title "Cystinosis". We've raised a few hundred dollars and have had nearly 1,000 join the cause with almost no effort.

:We've recently run across another cause for cystinosis which was started by someone we aren't familiar with. Donations are going to the other advocacy group in the U.S., which is fine, except he used our logo, website address and vision and mission information. I've "facebooked" the cause administrator just to point out the inconsistency and the confusion it might provide for possible donors with no response back.

:Finally, one of our medical advisory board members decided to start a CRN Facebook cause herself, as she didn't find CRN when she searched (our fault, should have titled our cause "CRN" specifically, not the general "cystinosis"). Donations from her cause go to CRN, and frankly, she did a much nicer job than us in setting it up! We've decided that having the two sites is complimentary in the end.

:I guess my point is that Facebook is a fairly uncontrolled space, putting your organization as a cause can provide very easily collected modest donations and raise awareness, but there is always the possibility (as in many situations, I suppose, like blogs, etc.) where other individuals can use information from your organization without your knowledge, which may or may not lead to any significant misunderstandings or harm.

*'''''How does a group go about getting permission to use photos from conferences on social media websites and in enewsletters? Additionally, if photos are used on Facebook, how does 'liking', 'sharing', and 'tagging' interact with privacy violations?'''''

:*Team Sanfilippo has a Facebook page and a private MPS community page as well. We have put posts up on occasion asking permission and parents have responded in several ways. Some have said use whatever you see online of my child, others have sent us a few pictures and and some have said to take anything from their child's personal site we want. So we print those threads out in case of an issue down the road. We've never run into any issues so far.
:*We have a photo/video release at our conferences that we ask families to sign, which basically is a waiver for any electronic or print distribution. However, sometimes families just send us photos via email, etc., to be used in our newsletter and don’t necessarily provide a formal release. For many years before we had an electronic newsletter, the pictures were used in our print newsletter. However, we have now decided to implement a policy wherein we obtain a formal release for use of any photos submitted by any mechanisms. I do have to make the disclaimer that we try not to identify any minor by name in photos. We do have a FB page, and we have “turned off” the ability for anyone other than the administrator to upload photos and our policy is not to upload any photos organizationally of patients. We also have a private password protected online community which does allow the user to upload pictures to their personal page. The community use agreement contains a disclaimer to the effect that although the site is private and password protected, we are not responsible for and cannot protect against the potential use of the photos outside the online community (because a member copies it and uses it elsewhere).

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Blogging]]
*[[Building a Website]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[People and Roles]]
*[[Recruiting]]
**[[Publicity and General Media]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Taking Credit Cards on the Web]]

Donations from Canada/Outside the US

2018-07-30T20:37:13Z

Aguise: /* Internal Links */

==Internal Links==

*[[Donations]]

Donations from Canada/Outside the US

2018-07-30T20:36:25Z

Aguise: /* Internal Links */

==Internal Links==

*[[Donations]]
*[[Events]]

Donations from Canada/Outside the US

2018-07-30T20:36:07Z

Aguise:

==Internal Links==

*[[Internal Donations]]
*[[Events]]
*[[Harnessing the Resources That Are Hard to Measure]]

Donations from Canada/Outside the US

2018-07-30T20:34:56Z

Aguise:

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Building a Website]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[People and Roles]]
*[[Recruiting]]
**[[Publicity and General Media]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Social Networking]]
*[[Taking Credit Cards on the Web]]

Taking Credit Cards on the Web

2018-07-30T20:12:20Z

Aguise:

You have several options for taking credit cards on the Web. They fall into two categories: using a service that collects the money and passes it back to you, or setting up your own virtual terminal. Your organization should consider several things as you select a method for taking donations, such as technical requirements and how much you expect to receive in donations.

'''Services that Collect Money on your Behalf'''

Services such as [http://www.paypal.com/ PayPal], [https://wallet.google.com/seller/integrate_email.html Google Checkout], or [http://www.networkforgood.org/ Network for Good] take credit cards over the Web and transfer funds to others. They have online merchant services in place and, after a modest setup fee (and sometimes a monthly fee), charge a small percentage or transaction fee to take payments on your behalf. The big advantage to these systems is simplicity and startup costs. These systems can be added to your Web site within one day for startup costs as low as an hour or two of Web work.

Google Checkout is offering commission [https://wallet.google.com/seller/fees.html free transactions] through 2008 to 501(c)(3) organizations. At the end of 2007, Google launched a very user friendly Donate program. They also have a very simple "Buy Now" that has very small fees and doesn't require the use of expensive shopping cart software.

Organizations that use PayPal report that it is easy to use for them as well as their donors. Preferences can be set so that your organization is notified of the donor's name and address when a donation is made. Or if you prefer, you can log into PayPal and print a running history of all transactions made through the service. Another advantage of PayPal is that it accepts international credit cards. Their accounts actually hold your funds until you transfer or spend it - but they do pay decent interest on held funds.

Groundspring and Network for Good are organized specifically to provide online tools and services for nonprofits. When you create an account with them, they provide simple html that you can easily place on your own website with no programming experience. They can be a bit more costly, however.

All of these services are"3rd party" processors. You never see or have access to the customer's credit card or checking account information. This is a great security/privacy benefit to your donors and reduces the burden you have of securing such information.

'''Setting up your own Terminal'''

Taking cards on the Web directly involves more development at your website. Some web development companies, such as https://www.webtrix.com/, can help develop the terminal and ways of visualizing transactions online. The first step is to open a merchant account, which you can do at the same place your organization banks. You should also feel free to shop around; other banks may offer significantly better terms for this service, even if you are happy with your organization's existing accounts.

Once you have a merchant account, you need "secure server" access (a service provided by most ISPs, typically with a monthly charge) and shopping cart software to actually complete the transactions, including verifying the credit cards. Most shopping cart software comes with customizable templates, but these will require adjustment, so don't forget to build in costs or time for webpage production as you embark on this project. Depending on your ISP's range of services and your merchant account's security requirements, you may also be required to buy a commercial "trust" certificate.

Like organizations such as Groundspring, merchant accounts will also involve transactions fees of some kind, although they may mean that a larger net income from donations goes to your organization. The total setup, however, can easily cost over $1000 and up, even if your ISP includes a shopping cart software license in your monthly fee. Setting them up also requires a careful Web maintainer, even if programming is not required.

'''Other Tips'''

Whatever system you use, make it simple for your donors. While any donor can easily understand how to put a check in an envelope, people are becoming increasingly comfortable with online payments and with good reason: many sites make them simple and secure. It is important that you make it as easy as possible for those visiting your site to make a donation to your organization at the moment that they are feeling appreciative for your services, especially if you include donation appeals in electronic (email or Web) newsletters.

Most advocacy organizations report large increases in the numbers of members that join after they establish a Web presence. Many report spikes after Christmas and Hanukkah, since end of the year giving usually increases, and computers and Internet access are popular gifts.

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Building a Website]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[People and Roles]]
*[[Recruiting]]
**[[Publicity and General Media]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Social Networking]]

Getting Grants

2018-07-30T20:10:47Z

Aguise: /* Foundation Grants */

Grants are available from many sources, although most granting agencies, from the government to small family foundations, have some guidelines they follow. You will need to do some sleuthing to find out where you might qualify for funds and how to submit a proposal for those funds. Sometimes this is as simple as a letter, and more often it is a fairly robust written proposal and considerable supporting documentation.

The two major sources for grant funding are private sources, such as corporations and foundations, and government sources. Each has pros and cons, and your organization should probably explore both, partly because they tend to support different types of needs.

==Foundation Grants==

The private sector makes monies available to organizations for several reasons. Private organizations may have a tax advantage or a charter requirement in doing so. Corporations may wish to counteract the effect of some negative attention they have received, or may simply be good corporate citizens interested in supporting community involvement.

There are several advantages to seeking monies from the private sector:

*The applications are typically short.
*The funding cycles are typically fast.
*The private sector often privileges simple criteria, such as geographical location. They often choose to fund projects in locations where they have a business interest or a large employee base.
*A private organization may well grant funds because of a personal connection, such as a board member or employee having an affected family member.
*Private-sector sources are a good source of funding for infrastructure, such as copiers or other equipment.
*While the amounts may be small, private-sector sources can be a great way to fund pilot projects to gather information or establish questions information you can then use for a larger grant application to another source.

The private sector isn't an all-purpose answer, though. The amounts available are usually smaller, for one thing. Also, factors like geography can work against you if you're in an area that is home to lots of nonprofits seeking funding, or a remote area. Corporations may only fund organizations whose agenda closely matches their own, and their definitions may be arbitrary.

The stock market isn't helping, either; many funding sources rely on market portfolios to generate income, and as the market has contracted, so have their grants. This has created a tremendous crisis for arts organizations. The silver lining for genetic advocacy organizations is that organizations representing health and science issues are more likely to receive funding.

Finding these organizations: You may already know of corporations or foundations you can approach, and you can generate a list using the Yellow Pages. There are several resources for identifying funders, too:

*[http://fdncenter.org/ '''The Foundation Center'''] - The Foundation Center offers a weekly email bulletin and courses. If you only have time to pursue one resource, this is a good one.
*[http://www.cos.com/ '''Community of Science'''] - Community of Science also offers a weekly email update, and its results may overlap with those of the Foundation Center.
*'''Sponsored Project Information Center (SPIN)'''. Available through public libraries, this resource usually requires a librarian to run a search for you, but it searches several databases of funding opportunities.
*'''Your local public library.''' Librarians are specialists in questions just like this (and this is a common one, so the answer is at the tip of their fingers). They can point you to indexes and run searches, like the SPIN search, for you.
*'''The World Wide Web.''' Web searches through engines such as [http://www.google.com Google] can offer more information than you can sift through, but if your queries or terms are very specific, or if you are getting a sense of the landscape, they certainly offer access to a wealth of information.
*'''You can also hire someone else to find, and write, grants for you.''' We'll talk more about this later.

Communicating with them: Private-sector sources can be accessed relatively informally, although as with any funding source, you should research their process and follow their directions. Your approach will depend primarily on what they tell you about how to tell them your story and whether you have personal contacts in the organization. You may simply have an employee forward a letter of intent to an internal office, or you may fill out a formal application.

Whatever the approach, the information you give them will not vary. You need to tell them:

*The goals of your project
*Why it is important
*How the research is relevant to them, their employees or community, or their mission
*How the research will benefit them
*Estimated costs (a single number, not a detailed budget)
*Any special advantages your organization or project has, such as location

This could take the form of a two-page business letter, and will usually receive some kind of reply (from "Not our issue" to "Here, fill out our application") in two to four weeks.

An application for private-sector funding is typically longer, and may include a couple of pages of the statement of need, a couple of pages of project description, a budget page, and a page describing your organization bookended by a one-page summary and a brief conclusion. Applications can sometimes benefit from an appendix, which may highlight the qualifications of project staff or show the results from a previous or related effort. They are usually acted on by the funding organization in about six to eight weeks.

As prepare your story for a potential sponsor, remember:

This audience is not expert in your area. Tell your story in a compelling, accessible way.

Some kind of personal contact can be a tremendous advantage, so consider attending events by local organizations that offer funding or that are funded by a source you'd like to get to know better. Introduce yourself; start a connection.

It's OK to send your proposal to several potential sources simultaneously. Especially in an environment where fewer dollars are available, this could enable you to efficiently pull together complete funding from several sources, rather than feel strapped by inadequate funding from one source.

More URLs:

Howard Hughes Medical Institute and the American Association for the Advancement of Science maintain a [http://www.Grantsnet.org/ site] that specializes in training grants for individuals in degree or postdoctoral programs, but it has some good general information as well.

==Government Grants==

The skills involved in winning government grants have the same foundation as those for foundation grants, but there are different protocolsand a few idiosyncratic requirements. This is a large subject and can have strong connections to research activities and advocacy efforts. We'll add more about this later. In the meantime, we invite you to share your organizations experiences with obtaining grants from government agencies info@geneticalliance.org.

==Should I Hire a Grant Writer?==

There are two answers to this question: Yes and No. Which answer fits your organization depends on your size, your funding requirements, your funding resources, and the funding environment. We'll add more about this later. In the meantime, we invite you to share your organization's experiences with grant writers info@geneticalliance.org.

I found this to be an interesting article to take away the fear of grant writing.
[http://grantseeking.net/ Demystifying Grant Seeking]

==ScanGrants==

ScanGrants [http://www.scangrants.com/]is a free online listing of grants, scholarships and other funding opportunities in the health sciences. We are a project of the Center for Health Research and Quality of Samaritan Health Services, a nonprofit network of Oregon hospitals, physicians and senior care facilities.

Our aim is to enable medical researchers, those involved in public and community health and those seeking to locate scholarships in the health sciences to efficiently find potential sources of funding so that they can work hard on science and health matters and not have to devote unproductive amounts of time searching for funding. ScanGrants has been adopted by various medical, public and academic libraries and offices of research administration in university settings. We strive to serve those who do not have access to expensive, for-profit databases of funding opportunities.

A bit of background. I am the Web administrator of ScanGrants and work very hard to apprise those in the library, research and clinical research fields of its existence so that a larger number of potential applicants can learn of opportunities for funding. The immediate goals are to generate interest in clinical research among novice researchers, to enable funders to be able to pick from a wider pool of applicants and to apprise experienced researchers and health science students of grants, fellowships and scholarships that they might never have heard of but for ScanGrants. The ultimate goal is to advance science by connecting researchers and funders more efficiently than has heretofore been the case. This is a win-win for everyone. We attempt to list funding opportunities that are often listed in few other online databases.

To that end, we welcome news of any grants or scholarships in the health sciences. If you are a disease advocacy organization, professional/scholarly society or foundation and wish to spread the news of grants to as wide a pool of potential applicants as possible, please feel me free to email with news of such opportunities for listing on ScanGrants.

Thank you for your trouble.

Hope Leman
Grants Coordinator
Center for Health Research
and Quality
Samaritan Health Services
815 NW 9th Street Suite 203A
Corvallis OR 97330
Telephone (541) 768-5712
hleman@samhealth.org
www.scangrants.com

==Grant Logistics==
After receiving a grant from a corporation, it is possible that they may ask for an invoice along with other forms such as a W-9. There are many templates for invoices that could be of use to your organization. For example, Microsoft Office has a number of free templates for creating invoices. See the following Links:
[https://templates.office.com/en-us/Invoices]
[http://office.microsoft.com/en-001/templates/results.aspx?qu=Sales+invoice+%28Green+Gradient+design%29&ex=1&avg=zwd]
Another option to consider is generating the invoice from your accounting software, such as, QuickBooks, or a similar software.

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Building a Website]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[People and Roles]]
*[[Recruiting]]
**[[Publicity and General Media]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Social Networking]]
*[[Taking Credit Cards on the Web]]

Getting Grants

2018-07-30T19:10:52Z

Aguise: /* Grant Logistics */

Grants are available from many sources, although most granting agencies, from the government to small family foundations, have some guidelines they follow. You will need to do some sleuthing to find out where you might qualify for funds and how to submit a proposal for those funds. Sometimes this is as simple as a letter, and more often it is a fairly robust written proposal and considerable supporting documentation.

The two major sources for grant funding are private sources, such as corporations and foundations, and government sources. Each has pros and cons, and your organization should probably explore both, partly because they tend to support different types of needs.

==Foundation Grants==

The private sector makes monies available to organizations for several reasons. Private organizations may have a tax advantage or a charter requirement in doing so. Corporations may wish to counteract the effect of some negative attention they have received, or may simply be good corporate citizens interested in supporting community involvement.

There are several advantages to seeking monies from the private sector:

*The applications are typically short.
*The funding cycles are typically fast.
*The private sector often privileges simple criteria, such as geographical location. They often choose to fund projects in locations where they have a business interest or a large employee base.
*A private organization may well grant funds because of a personal connection, such as a board member or employee having an affected family member.
*Private-sector sources are a good source of funding for infrastructure, such as copiers or other equipment.
*While the amounts may be small, private-sector sources can be a great way to fund pilot projects to gather information or establish questions information you can then use for a larger grant application to another source.

The private sector isn't an all-purpose answer, though. The amounts available are usually smaller, for one thing. Also, factors like geography can work against you if you're in an area that is home to lots of nonprofits seeking funding, or a remote area. Corporations may only fund organizations whose agenda closely matches their own, and their definitions may be arbitrary.

The stock market isn't helping, either; many funding sources rely on market portfolios to generate income, and as the market has contracted, so have their grants. This has created a tremendous crisis for arts organizations. The silver lining for genetic advocacy organizations is that organizations representing health and science issues are more likely to receive funding.

Finding these organizations: You may already know of corporations or foundations you can approach, and you can generate a list using the Yellow Pages. There are several resources for identifying funders, too:

*[http://fdncenter.org/ '''The Foundation Center'''] - The Foundation Center offers a weekly email bulletin and courses. If you only have time to pursue one resource, this is a good one.
*[http://www.cos.com/ '''Community of Science'''] - Community of Science also offers a weekly email update, and its results may overlap with those of the Foundation Center.
*'''Sponsored Project Information Center (SPIN)'''. Available through public libraries, this resource usually requires a librarian to run a search for you, but it searches several databases of funding opportunities.
*'''Your local public library.''' Librarians are specialists in questions just like this (and this is a common one, so the answer is at the tip of their fingers). They can point you to indexes and run searches, like the SPIN search, for you.
*'''The World Wide Web.''' Web searches through engines such as [http://www.google.com Google] can offer more information than you can sift through, but if your queries or terms are very specific, or if you are getting a sense of the landscape, they certainly offer access to a wealth of information.
*'''You can also hire someone else to find, and write, grants for you.''' We'll talk more about this later.

Communicating with them: Private-sector sources can be accessed relatively informally, although as with any funding source, you should research their process and follow their directions. Your approach will depend primarily on what they tell you about how to tell them your story and whether you have personal contacts in the organization. You may simply have an employee forward a letter of intent to an internal office, or you may fill out a formal application.

Whatever the approach, the information you give them will not vary. You need to tell them:

*The goals of your project
*Why it is important
*How the research is relevant to them, their employees or community, or their mission
*How the research will benefit them
*Estimated costs (a single number, not a detailed budget)
*Any special advantages your organization or project has, such as location

This could take the form of a two-page business letter, and will usually receive some kind of reply (from "Not our issue" to "Here, fill out our application") in two to four weeks.

An application for private-sector funding is typically longer, and may include a couple of pages of the statement of need, a couple of pages of project description, a budget page, and a page describing your organization bookended by a one-page summary and a brief conclusion. Applications can sometimes benefit from an appendix, which may highlight the qualifications of project staff or show the results from a previous or related effort. They are usually acted on by the funding organization in about six to eight weeks.

As prepare your story for a potential sponsor, remember:

This audience is not expert in your area. Tell your story in a compelling, accessible way.

Some kind of personal contact can be a tremendous advantage, so consider attending events by local organizations that offer funding or that are funded by a source you'd like to get to know better. Introduce yourself; start a connection.

It's OK to send your proposal to several potential sources simultaneously. Especially in an environment where fewer dollars are available, this could enable you to efficiently pull together complete funding from several sources, rather than feel strapped by inadequate funding from one source.

More URLs:

Larissa Golden Brown, a grantwriter, discusses grantwriting at her [http://grantseeking.net/ website].

Elizabether Brunner, another grantwriter, offers tips at her [http://www.grantproposal.com/ site].

Howard Hughes Medical Institute and the American Association for the Advancement of Science maintain a [http://www.Grantsnet.org/ site] that specializes in training grants for individuals in degree or postdoctoral programs, but it has some good general information as well.

==Government Grants==

The skills involved in winning government grants have the same foundation as those for foundation grants, but there are different protocolsand a few idiosyncratic requirements. This is a large subject and can have strong connections to research activities and advocacy efforts. We'll add more about this later. In the meantime, we invite you to share your organizations experiences with obtaining grants from government agencies info@geneticalliance.org.

==Should I Hire a Grant Writer?==

There are two answers to this question: Yes and No. Which answer fits your organization depends on your size, your funding requirements, your funding resources, and the funding environment. We'll add more about this later. In the meantime, we invite you to share your organization's experiences with grant writers info@geneticalliance.org.

I found this to be an interesting article to take away the fear of grant writing.
[http://grantseeking.net/ Demystifying Grant Seeking]

==ScanGrants==

ScanGrants [http://www.scangrants.com/]is a free online listing of grants, scholarships and other funding opportunities in the health sciences. We are a project of the Center for Health Research and Quality of Samaritan Health Services, a nonprofit network of Oregon hospitals, physicians and senior care facilities.

Our aim is to enable medical researchers, those involved in public and community health and those seeking to locate scholarships in the health sciences to efficiently find potential sources of funding so that they can work hard on science and health matters and not have to devote unproductive amounts of time searching for funding. ScanGrants has been adopted by various medical, public and academic libraries and offices of research administration in university settings. We strive to serve those who do not have access to expensive, for-profit databases of funding opportunities.

A bit of background. I am the Web administrator of ScanGrants and work very hard to apprise those in the library, research and clinical research fields of its existence so that a larger number of potential applicants can learn of opportunities for funding. The immediate goals are to generate interest in clinical research among novice researchers, to enable funders to be able to pick from a wider pool of applicants and to apprise experienced researchers and health science students of grants, fellowships and scholarships that they might never have heard of but for ScanGrants. The ultimate goal is to advance science by connecting researchers and funders more efficiently than has heretofore been the case. This is a win-win for everyone. We attempt to list funding opportunities that are often listed in few other online databases.

To that end, we welcome news of any grants or scholarships in the health sciences. If you are a disease advocacy organization, professional/scholarly society or foundation and wish to spread the news of grants to as wide a pool of potential applicants as possible, please feel me free to email with news of such opportunities for listing on ScanGrants.

Thank you for your trouble.

Hope Leman
Grants Coordinator
Center for Health Research
and Quality
Samaritan Health Services
815 NW 9th Street Suite 203A
Corvallis OR 97330
Telephone (541) 768-5712
hleman@samhealth.org
www.scangrants.com

==Grant Logistics==
After receiving a grant from a corporation, it is possible that they may ask for an invoice along with other forms such as a W-9. There are many templates for invoices that could be of use to your organization. For example, Microsoft Office has a number of free templates for creating invoices. See the following Links:
[https://templates.office.com/en-us/Invoices]
[http://office.microsoft.com/en-001/templates/results.aspx?qu=Sales+invoice+%28Green+Gradient+design%29&ex=1&avg=zwd]
Another option to consider is generating the invoice from your accounting software, such as, QuickBooks, or a similar software.

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Building a Website]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[People and Roles]]
*[[Recruiting]]
**[[Publicity and General Media]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Social Networking]]
*[[Taking Credit Cards on the Web]]

Building a Website

2018-07-30T18:55:26Z

Aguise: /* Factors to Consider */

Websites can be an excellent way to reach a wide audience quickly. They have the potential to provide much needed quality information about conditions to individuals who are researching them independently. In a lot of cases, they can be a first or early source of information on genetic disorders. A well-designed website that gets a lot of traffic can be an enormous asset. There are no hard and fast standards as far as content. However, Genetic Alliance's Access to Credible Genetics Resources program has toolkits addressing this, and many universities also have suggestions and scales to rate resources.

==Tips Before You Start==

There are dozens of books and websites that discuss the best way to design a site for specific purposes, and some of the most important guidelines are these:

*Use images carefully, and pay attention to their size—they should load easily even using dial-up connections.
*By all means, use color as a design element, but for sections of the page where there are chunks of text, the most legible combination is black text on a white background.
*Consider accessibility issues—can a user with low vision using a voice browser understand the way information is presented on the page? How about a color-blind user?
*Avoid animations and movies. Animations distract users. Flash is a popular software for creating animated websites or serving miniature movies, but it has virtually no accessibility features for sensory-impaired individuals. Using these techniques on your organization's site will limit your audience and may detract from your website's purpose: to share information and link members.
*Keep it simple. The simpler your site is, the easier it is for your users—and for the people who update it.

==Making a Website==

===Web Site Hosting===

If your organization is interested in building your own web site, you'll need to choose an appropriate 'host.' In deciding what host to use, it's important to consider what components you want your site to have such as text and graphics only or extras such as a store or message boards? Other things to think about include: Does the host offer the following - mysql - for a database? PHP - for making dynamic websites? or Email accounts? How much bandwidth will you be allowed each month? How much storage will you have on the website host? How good is technical support? Is it by phone or email? How much will it cost per month?

Here are some companies that other organizations use:
*[http://www.GoDaddy.com GoDaddy] - "GoDaddy are OK but as a web host they are not one of the best or the most reliable.
One common problem is they make it very difficult for the customer to transfer domain names - The web address of your website to another web site host. Another big problem is spam.. and we all hate spam. Some customers have complained that there website name (domain name) is easy to use by hackers and spammers because they charge extra for privacy and security tools. Now don't get me wrong I am not saying don't go there, because they have a lot of happy customers, Just be careful."
*[http://www.webtrix.com Webtrix] - "Very reliable and helpful. Easy to get in contact with when you have questions."
*[http://www.datarealm.com/ Datarealm Internet Services] - "We have used Datarealm Internet Services for years and been very happy with them. I think their non-profit rate is about $49.75 for six months."
*[http://www.aspwebhosting.com ASP Webhosting]
*[http://www.rackspace.com Rackspace] - "I've found them responsive and their web interface is very easy to use. In addition, they have a lot of room for expansion and offer many backup options to keep your website up and running."

===Web Site Designers===

Many organizations are finding designers to build intricate sites for them, in order to provide sophisticated services like message boards and databases of resources for disorders. Hiring a web designer to do freelance work is a reasonable option for advocacy organizations, especially if there is not enough work or monetary resources to support a full time employee. In order to circumvent this problem, it might be possible for multiple orgs to hire a professional and give them work on a contractual basis so they would have a full workload. It would be also a great introduction for them into the non-profit sector. Another option is to ask volunteers to build and maintain the website. This could work for specific sites and orgs, but volunteers usually work on a very flexible schedules, and may not be able to respond to immediate website needs. Consistency is the important thing. It is extremely beneficial if the website is constructed with solid code and updates are made regularly.

Many web designers have websites, like this:
*http://www.yourgraphicsguy.com
*http://www.webtrix.com (Good for hosting and designing complex features like shopping carts, and you can do maintenance yourself.)
*http://www.studio162.com

Here's a list of companies that other disease-specific organizations have used and approved of their work:

*[http://www.aimg.com Accurate Imaging]
*[http://www.cermack.com Cermack]
*[http://www.firespring.org/ Firespring] - One group said "The top selling points for us included their beautiful responsive design templates, their focus on nonprofits and integrated tools like email marketing, donor management and fundraising campaigns. I have only good things to say about this company. Their customer support is fantastic." And another added "We also started using Firespring just last year and we have gone from the expense of needing to use a professional Webmaster to add news and make adjustments to our site to now where a few of us are able to keep up with our site, add calendar events, News, and the latest research on HSP and PLS for our community. The system is really easy to work with and our costs have gone down dramatically."
*We hired a wonderful company called iFactory, based in Boston. Kimberly Emrick was our contact and she was outstanding. They developed a very good understanding of accessibility issues as well, since our agency worked with people who are deafblind.
*A wonderful digital partner, OneUpWeb (we’ll continue a long-term partnership with them). They truly sought to understand the needs of our genetic disease and patient community and we couldn’t be happier.
*I got and get help from Steve Shoffner at www.fefifolios.com. He mostly designs websites for artists. He guided me to learn enough so I can make changes and even take on some designing. At first he was concerned that he didn't know anything about what our organization does, but once I encouraged him that it's all the same in terms of information-sharing and user experience, we worked well together. For content, I had to do the heavy lifting and look at other examples, and think about how to organize the info. It's more work, but it costs less overall, and I'm empowered to keep it up-to-date. It was much less work than I thought it would be!

==Using a Content Management System==

Content Management Systems can be both a great help and a great hinderance in designing a web site. With some content management systems, groups find them to be inflexible and feel "trapped" in not being able to meet their needs, while other content managemen systems work well. Here are some tips from groups that use them:

*Joomla is a super system for developing a CMS website. Best of all it is free to use. It has a huge community of users, with a massive range and style of websites. The joy of setting up a website using it is that the site can be as simple or complex as you need, and the site can grow with you, by adding plug-ins and other tools to meet your needs. Lots of templates to get you going so if you find one you like, you can be up and running in under an hour. For a small website it can be a bit big, but on the whole it is great.

*A small site can be developed using WordPress, although normally used for blogging, Wordpress is a very powerful CMS tool. You can have a play with wordpress at no cost by going to [http://wordpress.com here]. You can sign up and create a site on the wordpress servers, and if it works for your needs, you can go to [http://wordpress.org here] to download a copy to install on your own server. It is also free.

*A few basic requirements you will need to check with your web hosting service no matter what CMS system you choose to use:
**Ask if you have PHP - version 5 is best but you can get away with a lowerversion numnber (not recomended though).
**Also you need a MYSQL Database on your hosting package.
**Your Hosting also needs to be on a LINUX server (Not a windows server.)
**If your hostimng meets the above requirements you are fine, otherwise for any free CMS you may need to switch or upgrade your web hosting package.

==Evaluating Your Site==
It is a good idea to evaluate your website every once in a while to see if it is functioning at its highest potential. There are some services out there that can help you with your evaluation.

WebXACT (formerly BOBBY) is a web-based service that checks sites for accessibility. It evaluates your site and lists recommendations to improve accessibility. You can ask it to use the World Wide Web Consortium Guidelines (available at W3.org) or [https://www.access-board.gov/guidelines-and-standards/communications-and-it/about-the-section-508-standards 508 Guidelines].

W3 and Section 508 rules are for format. Consider guidelines for content, as well. We recommend [http://www.hon.ch/HONcode/Guidelines/guidelines.html] on the Net Foundation—Code of Conduct. This code has guidelines for authority, accountability, and attribution that form a solid basis not only for designing your site's approach to information but for evaluating other sites as well.

== Evaluating Resources ==
One of the main services advocacy organizations can offer through their print and electronic tools is providing quality and accurate information about a condition as well as helping people sort through health information found from various other sources.

Help ensure your organization's materials are of the highest standards by creating or updating them with the assistance of the developer's version of the [http://www.trustortrash.org/developer ''Trust It or Trash It?''] tool.

Your members may have many places they find information other than your organization. Encourage them to use the [http://www.trustortrash.org ''Trust It or Trash It?''] tool to critically evaluate health information. You can even include a widget on your site that allows users to simultaneously see the content of interest and the tool. To learn more visit [http://www.youtube.com/geneticalliance#p/u/6/IKa7BlKpPZg Genetic Alliance's YouTube Channel].

==Factors to Consider==
*The complexity of the site design
*Resources available to the organization for site design
*The cost of professional site help
*The potential of the site for growth and change (especially complicated additions like message boards and shopping carts)
*Location! Prices for web design services tend to vary; they are generally higher near large cities.
*Some designers pay per page, and often prices vary based on the amount of coding that needs to be done.
*It is always worth writing to the CEO of the hosting company you like the look of. Often you may either get a good deal or an offer of free hosting.
*On the subject of domain names... A lot of nasty people may see your domain getting traffic and set up a copy cat advertising domain trading on the miss typing of the charity domain. They set up a single page advert site. It is worth investing in the main names for your site to avoid this situation and to protect your intellectual property.
*Make sure your website is accessible to those with visual impairments. You can use http://wave.webaim.org/ to help with an assessment.

 It's worth shopping around based on your organization's needs!

While on the topic of intellectual property rights, it is important to note that it is also possible for people to steal images that you post to your site. Thus, it is important to consider the possible measures that can be to taken to reduce or eliminate the likelihood this unfortunate circumstance could occur. Below are some thoughts on this, along with some mechanisms organizations utilized to keep their photos protected.

Jean Pickford

Foundation for Ichthyosis & Related Skin Types, Inc.

“ The Foundation for Ichthyosis and Related Skin Types, Inc. (FIRST) represents patients with a very visible and disfiguring genetic skin disease. We have consented photos on our website that show the various forms of the disease, ranging from newborns to adults. There have been occasions when our photos have been copied from our website and posted on social media sites to gain attention/followers. In one case last year, a photo of a harlequin ichthyosis newborn was taken from our site and posted on Facebook, which went viral (i.e., one like = one prayer for this baby) with more than 2 million likes & more than 30,000 comments. Needless to say, some of the comments were nasty, like “this is a reptile baby” or “it’s an alien, put them out of their misery.”

Some of us here at FIRST feel very strongly that it is our duty to protect these photos from any exploitation on behalf of those we serve, and thus, they should be “watermarked.” However, others feel very strongly that a watermark detracts from the purpose of the photo in helping physicians, families, and others who are trying to learn about the disease.

In discussing it with some of our board members and web admins, we have added a “blocker” that pops up when you right click any photos on our site as well as a watermark on the images, so if they are taken without permission, they can’t be used. An example of this can be viewed at: [http://www.firstskinfoundation.org/content.cfm/Ichthyosis/Harlequin-Ichthyosis/page_id/547 FIRST Harlequin Ichthyosis].”

Janet Long

US Hereditary Angioedema Center

“For the specific issue of a forum, some web development companies could be a good fit for advising on this. I'd strongly recommend finding a stable off the shelf solution rather than trying to roll your own unless you have mountains of money to throw at it. If you identify the product that you want to use, then sometimes the company that develops the product can recommend experienced implementation people.”

Christy Collins

M-CM Network

==Search Engine Optimization and Helping People Find Your Site==

Search engine optimization consists of identifying search terms (or "keywords") that people who are looking for your site are likely to use, and then optimizing the content and code of your website for those terms. Additionally, your placement in search results is impacted by the volume and content of other sites that link to your website. Working on search engine optimization shouldn't significantly alter your activities or site content. Rather, an awareness of the principles of search engine optimization will inform details about how you present your content and interact with other websites.

===Generate A Keyword List===

The first thing to do is generate a list of keywords, or search terms, to target. This list may include all of the disease/syndrome names that your organization covers (including acronyms, abbreviations and variants), significant symptoms or signs, and anything else that a person might punch into a search engine when they are looking for the information that your site offers. You may want to survey some new members to see if they looked for you via search engine and if they remember what words they searched for. Once you have this list, sort it by relevance.

===HTML tags for SEO===

Important html tags for search engine optimization are fairly simple.
* The most important tag is <title>. The <title> tag doesn't actually appear on your web page, but rather in the top of your browser window. It will be used as the title of your search result listing on Google and the default title if your page is shared on Facebook.
* Next are heading tags: <pre><h1>, <h2>, <h3></pre> With h1 being the most important. Survey your site's content for places that you can sensibly fit your keywords into these tags.
* Set a meta description tag for the most important pages on your site and consider using your keywords here. Like the <title> tag, the description tag doesn't display on the site, but it has a lot of utility for other sites that parse your content. Besides search rank, Google uses it to display in it's search results. It is used on Facebook when your page is shared on a user's wall. This tag looks like: <pre><meta name="description" content="My page description." /></pre> Google will display the first 150 characters in the content attribute, you should try to keep the size of your description in that range.

===Incoming Links===

There is much nastiness on the internet due to the fact that incoming links boost search rank. Fortunately for many of us, our search terms are so obscure that we don't have a lot of competition for rank, and a little bit of effort with integrity should go a long way. The most important detail to know is that linking a keyword to your site will be much more powerful than linking a generic phrase like "click here" or "link".
Some simple suggestions:
- If you get media publicity, make sure that any internet version of the article correctly links to your site. If it doesn't, politely request that the link be added. A newspaper is not obligated to to do this, but it's worth asking.
- If you have affected families, fundraisers or board members who have their own blogs or websites, suggest ways that they could link to you if they are not already doing so. You may even want to offer badges that link to your site.

===Other Traffic===

* Facebook has potential for generating valuable traffic to your site, although most Facebook linking will not affect your Google search rank. Add Facebook "like" and "share" buttons to your site. Take a look at the default content that Facebook displays when a page on your site is shared to verify that it's accurate and helpful. This will consist of your <title> tag and meta description OR largest block of paragraph content if you don't have a meta description.
* Wikipedia links also do not contribute to search engine rank. However, when searching on medical terms and syndrome names, Wikipedia results often come up in the top three results. Make sure your organization is linked to from the links section of the wikipedia page/s for your disease. If your disease doesn't have a wikipedia page, make one.
* Be sure your disorder is listed on the appropriate databases, that the information is current and accurate and that your advocacy site is linked to. [[Information about Rare Genetic Diseases|Disease Databases]]

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[People and Roles]]
*[[Recruiting]]
**[[Publicity and General Media]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Social Networking]]
*[[Taking Credit Cards on the Web]]

Building a Website

2018-07-30T18:53:44Z

Aguise: /* Web Site Designers */

Websites can be an excellent way to reach a wide audience quickly. They have the potential to provide much needed quality information about conditions to individuals who are researching them independently. In a lot of cases, they can be a first or early source of information on genetic disorders. A well-designed website that gets a lot of traffic can be an enormous asset. There are no hard and fast standards as far as content. However, Genetic Alliance's Access to Credible Genetics Resources program has toolkits addressing this, and many universities also have suggestions and scales to rate resources.

==Tips Before You Start==

There are dozens of books and websites that discuss the best way to design a site for specific purposes, and some of the most important guidelines are these:

*Use images carefully, and pay attention to their size—they should load easily even using dial-up connections.
*By all means, use color as a design element, but for sections of the page where there are chunks of text, the most legible combination is black text on a white background.
*Consider accessibility issues—can a user with low vision using a voice browser understand the way information is presented on the page? How about a color-blind user?
*Avoid animations and movies. Animations distract users. Flash is a popular software for creating animated websites or serving miniature movies, but it has virtually no accessibility features for sensory-impaired individuals. Using these techniques on your organization's site will limit your audience and may detract from your website's purpose: to share information and link members.
*Keep it simple. The simpler your site is, the easier it is for your users—and for the people who update it.

==Making a Website==

===Web Site Hosting===

If your organization is interested in building your own web site, you'll need to choose an appropriate 'host.' In deciding what host to use, it's important to consider what components you want your site to have such as text and graphics only or extras such as a store or message boards? Other things to think about include: Does the host offer the following - mysql - for a database? PHP - for making dynamic websites? or Email accounts? How much bandwidth will you be allowed each month? How much storage will you have on the website host? How good is technical support? Is it by phone or email? How much will it cost per month?

Here are some companies that other organizations use:
*[http://www.GoDaddy.com GoDaddy] - "GoDaddy are OK but as a web host they are not one of the best or the most reliable.
One common problem is they make it very difficult for the customer to transfer domain names - The web address of your website to another web site host. Another big problem is spam.. and we all hate spam. Some customers have complained that there website name (domain name) is easy to use by hackers and spammers because they charge extra for privacy and security tools. Now don't get me wrong I am not saying don't go there, because they have a lot of happy customers, Just be careful."
*[http://www.webtrix.com Webtrix] - "Very reliable and helpful. Easy to get in contact with when you have questions."
*[http://www.datarealm.com/ Datarealm Internet Services] - "We have used Datarealm Internet Services for years and been very happy with them. I think their non-profit rate is about $49.75 for six months."
*[http://www.aspwebhosting.com ASP Webhosting]
*[http://www.rackspace.com Rackspace] - "I've found them responsive and their web interface is very easy to use. In addition, they have a lot of room for expansion and offer many backup options to keep your website up and running."

===Web Site Designers===

Many organizations are finding designers to build intricate sites for them, in order to provide sophisticated services like message boards and databases of resources for disorders. Hiring a web designer to do freelance work is a reasonable option for advocacy organizations, especially if there is not enough work or monetary resources to support a full time employee. In order to circumvent this problem, it might be possible for multiple orgs to hire a professional and give them work on a contractual basis so they would have a full workload. It would be also a great introduction for them into the non-profit sector. Another option is to ask volunteers to build and maintain the website. This could work for specific sites and orgs, but volunteers usually work on a very flexible schedules, and may not be able to respond to immediate website needs. Consistency is the important thing. It is extremely beneficial if the website is constructed with solid code and updates are made regularly.

Many web designers have websites, like this:
*http://www.yourgraphicsguy.com
*http://www.webtrix.com (Good for hosting and designing complex features like shopping carts, and you can do maintenance yourself.)
*http://www.studio162.com

Here's a list of companies that other disease-specific organizations have used and approved of their work:

*[http://www.aimg.com Accurate Imaging]
*[http://www.cermack.com Cermack]
*[http://www.firespring.org/ Firespring] - One group said "The top selling points for us included their beautiful responsive design templates, their focus on nonprofits and integrated tools like email marketing, donor management and fundraising campaigns. I have only good things to say about this company. Their customer support is fantastic." And another added "We also started using Firespring just last year and we have gone from the expense of needing to use a professional Webmaster to add news and make adjustments to our site to now where a few of us are able to keep up with our site, add calendar events, News, and the latest research on HSP and PLS for our community. The system is really easy to work with and our costs have gone down dramatically."
*We hired a wonderful company called iFactory, based in Boston. Kimberly Emrick was our contact and she was outstanding. They developed a very good understanding of accessibility issues as well, since our agency worked with people who are deafblind.
*A wonderful digital partner, OneUpWeb (we’ll continue a long-term partnership with them). They truly sought to understand the needs of our genetic disease and patient community and we couldn’t be happier.
*I got and get help from Steve Shoffner at www.fefifolios.com. He mostly designs websites for artists. He guided me to learn enough so I can make changes and even take on some designing. At first he was concerned that he didn't know anything about what our organization does, but once I encouraged him that it's all the same in terms of information-sharing and user experience, we worked well together. For content, I had to do the heavy lifting and look at other examples, and think about how to organize the info. It's more work, but it costs less overall, and I'm empowered to keep it up-to-date. It was much less work than I thought it would be!

==Using a Content Management System==

Content Management Systems can be both a great help and a great hinderance in designing a web site. With some content management systems, groups find them to be inflexible and feel "trapped" in not being able to meet their needs, while other content managemen systems work well. Here are some tips from groups that use them:

*Joomla is a super system for developing a CMS website. Best of all it is free to use. It has a huge community of users, with a massive range and style of websites. The joy of setting up a website using it is that the site can be as simple or complex as you need, and the site can grow with you, by adding plug-ins and other tools to meet your needs. Lots of templates to get you going so if you find one you like, you can be up and running in under an hour. For a small website it can be a bit big, but on the whole it is great.

*A small site can be developed using WordPress, although normally used for blogging, Wordpress is a very powerful CMS tool. You can have a play with wordpress at no cost by going to [http://wordpress.com here]. You can sign up and create a site on the wordpress servers, and if it works for your needs, you can go to [http://wordpress.org here] to download a copy to install on your own server. It is also free.

*A few basic requirements you will need to check with your web hosting service no matter what CMS system you choose to use:
**Ask if you have PHP - version 5 is best but you can get away with a lowerversion numnber (not recomended though).
**Also you need a MYSQL Database on your hosting package.
**Your Hosting also needs to be on a LINUX server (Not a windows server.)
**If your hostimng meets the above requirements you are fine, otherwise for any free CMS you may need to switch or upgrade your web hosting package.

==Evaluating Your Site==
It is a good idea to evaluate your website every once in a while to see if it is functioning at its highest potential. There are some services out there that can help you with your evaluation.

WebXACT (formerly BOBBY) is a web-based service that checks sites for accessibility. It evaluates your site and lists recommendations to improve accessibility. You can ask it to use the World Wide Web Consortium Guidelines (available at W3.org) or [https://www.access-board.gov/guidelines-and-standards/communications-and-it/about-the-section-508-standards 508 Guidelines].

W3 and Section 508 rules are for format. Consider guidelines for content, as well. We recommend [http://www.hon.ch/HONcode/Guidelines/guidelines.html] on the Net Foundation—Code of Conduct. This code has guidelines for authority, accountability, and attribution that form a solid basis not only for designing your site's approach to information but for evaluating other sites as well.

== Evaluating Resources ==
One of the main services advocacy organizations can offer through their print and electronic tools is providing quality and accurate information about a condition as well as helping people sort through health information found from various other sources.

Help ensure your organization's materials are of the highest standards by creating or updating them with the assistance of the developer's version of the [http://www.trustortrash.org/developer ''Trust It or Trash It?''] tool.

Your members may have many places they find information other than your organization. Encourage them to use the [http://www.trustortrash.org ''Trust It or Trash It?''] tool to critically evaluate health information. You can even include a widget on your site that allows users to simultaneously see the content of interest and the tool. To learn more visit [http://www.youtube.com/geneticalliance#p/u/6/IKa7BlKpPZg Genetic Alliance's YouTube Channel].

==Factors to Consider==
*The complexity of the site design
*Resources available to the organization for site design
*The cost of professional site help
*The potential of the site for growth and change (especially complicated additions like message boards and shopping carts)
*Location! Prices for web design services tend to vary; they are generally higher near large cities.
*Some designers pay per page, and often prices vary based on the amount of coding that needs to be done.
*It is always worth writing to the CEO of the hosting company you like the look of. Often you may either get a good deal or an offer of free hosting.
*On the subject of domain names... A lot of nasty people may see your domain getting traffic and set up a copy cat advertising domain trading on the miss typing of the charity domain. They set up a single page advert site. It is worth investing in the main names for your site to avoid this situation and to protect your intellectual property.
*Make sure your website is accessible to those with visual impairments. You can use http://wave.webaim.org/ to help with an assessment.

 It's worth shopping around based on your organization's needs!

While on the topic of intellectual property rights, it is important to note that it is also possible for people to steal images that you post to your site. Thus, it is important to consider the possible measures that can be to taken to reduce or eliminate the likelihood this unfortunate circumstance could occur. Below are some thoughts on this, along with some mechanisms organizations utilized to keep their photos protected.

Jean Pickford

Foundation for Ichthyosis & Related Skin Types, Inc.

“ The Foundation for Ichthyosis and Related Skin Types, Inc. (FIRST) represents patients with a very visible and disfiguring genetic skin disease. We have consented photos on our website that show the various forms of the disease, ranging from newborns to adults. There have been occasions when our photos have been copied from our website and posted on social media sites to gain attention/followers. In one case last year, a photo of a harlequin ichthyosis newborn was taken from our site and posted on Facebook, which went viral (i.e., one like = one prayer for this baby) with more than 2 million likes & more than 30,000 comments. Needless to say, some of the comments were nasty, like “this is a reptile baby” or “it’s an alien, put them out of their misery.”

Some of us here at FIRST feel very strongly that it is our duty to protect these photos from any exploitation on behalf of those we serve, and thus, they should be “watermarked.” However, others feel very strongly that a watermark detracts from the purpose of the photo in helping physicians, families, and others who are trying to learn about the disease.

In discussing it with some of our board members and web admins, we have added a “blocker” that pops up when you right click any photos on our site as well as a watermark on the images, so if they are taken without permission, they can’t be used. An example of this can be viewed at: [http://www.firstskinfoundation.org/content.cfm/Ichthyosis/Harlequin-Ichthyosis/page_id/547 FIRST Harlequin Ichthyosis].”

Janet Long

US Hereditary Angioedema Center

“The website where we host our images is: [https://www.haeimages.com HaeImages]. With so many players in our “HAE space”, we found our web site images appearing in good places and bad. Therefore, we organized an image repository where patients could donate images and we could somewhat handle their use via the sale of them; the sales could in return support new research.

It has been as successful as I could have hoped, I think, in keeping our images safe.
However, there are still images taken from our web site (we did not watermark them, but instead trademarked the web site and this is usually enough to scare folks off from stealing….)”

“For the specific issue of a forum, some web development companies could be a good fit for advising on this. I'd strongly recommend finding a stable off the shelf solution rather than trying to roll your own unless you have mountains of money to throw at it. If you identify the product that you want to use, then sometimes the company that develops the product can recommend experienced implementation people.”

Christy Collins

M-CM Network

==Search Engine Optimization and Helping People Find Your Site==

Search engine optimization consists of identifying search terms (or "keywords") that people who are looking for your site are likely to use, and then optimizing the content and code of your website for those terms. Additionally, your placement in search results is impacted by the volume and content of other sites that link to your website. Working on search engine optimization shouldn't significantly alter your activities or site content. Rather, an awareness of the principles of search engine optimization will inform details about how you present your content and interact with other websites.

===Generate A Keyword List===

The first thing to do is generate a list of keywords, or search terms, to target. This list may include all of the disease/syndrome names that your organization covers (including acronyms, abbreviations and variants), significant symptoms or signs, and anything else that a person might punch into a search engine when they are looking for the information that your site offers. You may want to survey some new members to see if they looked for you via search engine and if they remember what words they searched for. Once you have this list, sort it by relevance.

===HTML tags for SEO===

Important html tags for search engine optimization are fairly simple.
* The most important tag is <title>. The <title> tag doesn't actually appear on your web page, but rather in the top of your browser window. It will be used as the title of your search result listing on Google and the default title if your page is shared on Facebook.
* Next are heading tags: <pre><h1>, <h2>, <h3></pre> With h1 being the most important. Survey your site's content for places that you can sensibly fit your keywords into these tags.
* Set a meta description tag for the most important pages on your site and consider using your keywords here. Like the <title> tag, the description tag doesn't display on the site, but it has a lot of utility for other sites that parse your content. Besides search rank, Google uses it to display in it's search results. It is used on Facebook when your page is shared on a user's wall. This tag looks like: <pre><meta name="description" content="My page description." /></pre> Google will display the first 150 characters in the content attribute, you should try to keep the size of your description in that range.

===Incoming Links===

There is much nastiness on the internet due to the fact that incoming links boost search rank. Fortunately for many of us, our search terms are so obscure that we don't have a lot of competition for rank, and a little bit of effort with integrity should go a long way. The most important detail to know is that linking a keyword to your site will be much more powerful than linking a generic phrase like "click here" or "link".
Some simple suggestions:
- If you get media publicity, make sure that any internet version of the article correctly links to your site. If it doesn't, politely request that the link be added. A newspaper is not obligated to to do this, but it's worth asking.
- If you have affected families, fundraisers or board members who have their own blogs or websites, suggest ways that they could link to you if they are not already doing so. You may even want to offer badges that link to your site.

===Other Traffic===

* Facebook has potential for generating valuable traffic to your site, although most Facebook linking will not affect your Google search rank. Add Facebook "like" and "share" buttons to your site. Take a look at the default content that Facebook displays when a page on your site is shared to verify that it's accurate and helpful. This will consist of your <title> tag and meta description OR largest block of paragraph content if you don't have a meta description.
* Wikipedia links also do not contribute to search engine rank. However, when searching on medical terms and syndrome names, Wikipedia results often come up in the top three results. Make sure your organization is linked to from the links section of the wikipedia page/s for your disease. If your disease doesn't have a wikipedia page, make one.
* Be sure your disorder is listed on the appropriate databases, that the information is current and accurate and that your advocacy site is linked to. [[Information about Rare Genetic Diseases|Disease Databases]]

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[People and Roles]]
*[[Recruiting]]
**[[Publicity and General Media]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Social Networking]]
*[[Taking Credit Cards on the Web]]

Building a Website

2018-07-30T18:52:22Z

Aguise: /* Web Site Designers */

Websites can be an excellent way to reach a wide audience quickly. They have the potential to provide much needed quality information about conditions to individuals who are researching them independently. In a lot of cases, they can be a first or early source of information on genetic disorders. A well-designed website that gets a lot of traffic can be an enormous asset. There are no hard and fast standards as far as content. However, Genetic Alliance's Access to Credible Genetics Resources program has toolkits addressing this, and many universities also have suggestions and scales to rate resources.

==Tips Before You Start==

There are dozens of books and websites that discuss the best way to design a site for specific purposes, and some of the most important guidelines are these:

*Use images carefully, and pay attention to their size—they should load easily even using dial-up connections.
*By all means, use color as a design element, but for sections of the page where there are chunks of text, the most legible combination is black text on a white background.
*Consider accessibility issues—can a user with low vision using a voice browser understand the way information is presented on the page? How about a color-blind user?
*Avoid animations and movies. Animations distract users. Flash is a popular software for creating animated websites or serving miniature movies, but it has virtually no accessibility features for sensory-impaired individuals. Using these techniques on your organization's site will limit your audience and may detract from your website's purpose: to share information and link members.
*Keep it simple. The simpler your site is, the easier it is for your users—and for the people who update it.

==Making a Website==

===Web Site Hosting===

If your organization is interested in building your own web site, you'll need to choose an appropriate 'host.' In deciding what host to use, it's important to consider what components you want your site to have such as text and graphics only or extras such as a store or message boards? Other things to think about include: Does the host offer the following - mysql - for a database? PHP - for making dynamic websites? or Email accounts? How much bandwidth will you be allowed each month? How much storage will you have on the website host? How good is technical support? Is it by phone or email? How much will it cost per month?

Here are some companies that other organizations use:
*[http://www.GoDaddy.com GoDaddy] - "GoDaddy are OK but as a web host they are not one of the best or the most reliable.
One common problem is they make it very difficult for the customer to transfer domain names - The web address of your website to another web site host. Another big problem is spam.. and we all hate spam. Some customers have complained that there website name (domain name) is easy to use by hackers and spammers because they charge extra for privacy and security tools. Now don't get me wrong I am not saying don't go there, because they have a lot of happy customers, Just be careful."
*[http://www.webtrix.com Webtrix] - "Very reliable and helpful. Easy to get in contact with when you have questions."
*[http://www.datarealm.com/ Datarealm Internet Services] - "We have used Datarealm Internet Services for years and been very happy with them. I think their non-profit rate is about $49.75 for six months."
*[http://www.aspwebhosting.com ASP Webhosting]
*[http://www.rackspace.com Rackspace] - "I've found them responsive and their web interface is very easy to use. In addition, they have a lot of room for expansion and offer many backup options to keep your website up and running."

===Web Site Designers===

Many organizations are finding designers to build intricate sites for them, in order to provide sophisticated services like message boards and databases of resources for disorders. Hiring a web designer to do freelance work is a reasonable option for advocacy organizations, especially if there is not enough work or monetary resources to support a full time employee. In order to circumvent this problem, it might be possible for multiple orgs to hire a professional and give them work on a contractual basis so they would have a full workload. It would be also a great introduction for them into the non-profit sector. Another option is to ask volunteers to build and maintain the website. This could work for specific sites and orgs, but volunteers usually work on a very flexible schedules, and may not be able to respond to immediate website needs. Consistency is the important thing. It is extremely beneficial if the website is constructed with solid code and updates are made regularly.

Many web designers have websites, like this:
*http://www.yourgraphicsguy.com
*http://www.webtrix.com (Good for hosting and designing complex features like shopping carts, and you can do maintenance yourself.)
*http://www.kineticsolutionsservices.com/
*http://www.studio162.com

Here's a list of companies that other disease-specific organizations have used and approved of their work:

*[http://www.aimg.com Accurate Imaging]
*[http://www.cermack.com Cermack]
*[http://www.firespring.org/ Firespring] - One group said "The top selling points for us included their beautiful responsive design templates, their focus on nonprofits and integrated tools like email marketing, donor management and fundraising campaigns. I have only good things to say about this company. Their customer support is fantastic." And another added "We also started using Firespring just last year and we have gone from the expense of needing to use a professional Webmaster to add news and make adjustments to our site to now where a few of us are able to keep up with our site, add calendar events, News, and the latest research on HSP and PLS for our community. The system is really easy to work with and our costs have gone down dramatically."
*We hired a wonderful company called iFactory, based in Boston. Kimberly Emrick was our contact and she was outstanding. They developed a very good understanding of accessibility issues as well, since our agency worked with people who are deafblind.
*A wonderful digital partner, OneUpWeb (we’ll continue a long-term partnership with them). They truly sought to understand the needs of our genetic disease and patient community and we couldn’t be happier.
*I got and get help from Steve Shoffner at www.fefifolios.com. He mostly designs websites for artists. He guided me to learn enough so I can make changes and even take on some designing. At first he was concerned that he didn't know anything about what our organization does, but once I encouraged him that it's all the same in terms of information-sharing and user experience, we worked well together. For content, I had to do the heavy lifting and look at other examples, and think about how to organize the info. It's more work, but it costs less overall, and I'm empowered to keep it up-to-date. It was much less work than I thought it would be!

==Using a Content Management System==

Content Management Systems can be both a great help and a great hinderance in designing a web site. With some content management systems, groups find them to be inflexible and feel "trapped" in not being able to meet their needs, while other content managemen systems work well. Here are some tips from groups that use them:

*Joomla is a super system for developing a CMS website. Best of all it is free to use. It has a huge community of users, with a massive range and style of websites. The joy of setting up a website using it is that the site can be as simple or complex as you need, and the site can grow with you, by adding plug-ins and other tools to meet your needs. Lots of templates to get you going so if you find one you like, you can be up and running in under an hour. For a small website it can be a bit big, but on the whole it is great.

*A small site can be developed using WordPress, although normally used for blogging, Wordpress is a very powerful CMS tool. You can have a play with wordpress at no cost by going to [http://wordpress.com here]. You can sign up and create a site on the wordpress servers, and if it works for your needs, you can go to [http://wordpress.org here] to download a copy to install on your own server. It is also free.

*A few basic requirements you will need to check with your web hosting service no matter what CMS system you choose to use:
**Ask if you have PHP - version 5 is best but you can get away with a lowerversion numnber (not recomended though).
**Also you need a MYSQL Database on your hosting package.
**Your Hosting also needs to be on a LINUX server (Not a windows server.)
**If your hostimng meets the above requirements you are fine, otherwise for any free CMS you may need to switch or upgrade your web hosting package.

==Evaluating Your Site==
It is a good idea to evaluate your website every once in a while to see if it is functioning at its highest potential. There are some services out there that can help you with your evaluation.

WebXACT (formerly BOBBY) is a web-based service that checks sites for accessibility. It evaluates your site and lists recommendations to improve accessibility. You can ask it to use the World Wide Web Consortium Guidelines (available at W3.org) or [https://www.access-board.gov/guidelines-and-standards/communications-and-it/about-the-section-508-standards 508 Guidelines].

W3 and Section 508 rules are for format. Consider guidelines for content, as well. We recommend [http://www.hon.ch/HONcode/Guidelines/guidelines.html] on the Net Foundation—Code of Conduct. This code has guidelines for authority, accountability, and attribution that form a solid basis not only for designing your site's approach to information but for evaluating other sites as well.

== Evaluating Resources ==
One of the main services advocacy organizations can offer through their print and electronic tools is providing quality and accurate information about a condition as well as helping people sort through health information found from various other sources.

Help ensure your organization's materials are of the highest standards by creating or updating them with the assistance of the developer's version of the [http://www.trustortrash.org/developer ''Trust It or Trash It?''] tool.

Your members may have many places they find information other than your organization. Encourage them to use the [http://www.trustortrash.org ''Trust It or Trash It?''] tool to critically evaluate health information. You can even include a widget on your site that allows users to simultaneously see the content of interest and the tool. To learn more visit [http://www.youtube.com/geneticalliance#p/u/6/IKa7BlKpPZg Genetic Alliance's YouTube Channel].

==Factors to Consider==
*The complexity of the site design
*Resources available to the organization for site design
*The cost of professional site help
*The potential of the site for growth and change (especially complicated additions like message boards and shopping carts)
*Location! Prices for web design services tend to vary; they are generally higher near large cities.
*Some designers pay per page, and often prices vary based on the amount of coding that needs to be done.
*It is always worth writing to the CEO of the hosting company you like the look of. Often you may either get a good deal or an offer of free hosting.
*On the subject of domain names... A lot of nasty people may see your domain getting traffic and set up a copy cat advertising domain trading on the miss typing of the charity domain. They set up a single page advert site. It is worth investing in the main names for your site to avoid this situation and to protect your intellectual property.
*Make sure your website is accessible to those with visual impairments. You can use http://wave.webaim.org/ to help with an assessment.

 It's worth shopping around based on your organization's needs!

While on the topic of intellectual property rights, it is important to note that it is also possible for people to steal images that you post to your site. Thus, it is important to consider the possible measures that can be to taken to reduce or eliminate the likelihood this unfortunate circumstance could occur. Below are some thoughts on this, along with some mechanisms organizations utilized to keep their photos protected.

Jean Pickford

Foundation for Ichthyosis & Related Skin Types, Inc.

“ The Foundation for Ichthyosis and Related Skin Types, Inc. (FIRST) represents patients with a very visible and disfiguring genetic skin disease. We have consented photos on our website that show the various forms of the disease, ranging from newborns to adults. There have been occasions when our photos have been copied from our website and posted on social media sites to gain attention/followers. In one case last year, a photo of a harlequin ichthyosis newborn was taken from our site and posted on Facebook, which went viral (i.e., one like = one prayer for this baby) with more than 2 million likes & more than 30,000 comments. Needless to say, some of the comments were nasty, like “this is a reptile baby” or “it’s an alien, put them out of their misery.”

Some of us here at FIRST feel very strongly that it is our duty to protect these photos from any exploitation on behalf of those we serve, and thus, they should be “watermarked.” However, others feel very strongly that a watermark detracts from the purpose of the photo in helping physicians, families, and others who are trying to learn about the disease.

In discussing it with some of our board members and web admins, we have added a “blocker” that pops up when you right click any photos on our site as well as a watermark on the images, so if they are taken without permission, they can’t be used. An example of this can be viewed at: [http://www.firstskinfoundation.org/content.cfm/Ichthyosis/Harlequin-Ichthyosis/page_id/547 FIRST Harlequin Ichthyosis].”

Janet Long

US Hereditary Angioedema Center

“The website where we host our images is: [https://www.haeimages.com HaeImages]. With so many players in our “HAE space”, we found our web site images appearing in good places and bad. Therefore, we organized an image repository where patients could donate images and we could somewhat handle their use via the sale of them; the sales could in return support new research.

It has been as successful as I could have hoped, I think, in keeping our images safe.
However, there are still images taken from our web site (we did not watermark them, but instead trademarked the web site and this is usually enough to scare folks off from stealing….)”

“For the specific issue of a forum, some web development companies could be a good fit for advising on this. I'd strongly recommend finding a stable off the shelf solution rather than trying to roll your own unless you have mountains of money to throw at it. If you identify the product that you want to use, then sometimes the company that develops the product can recommend experienced implementation people.”

Christy Collins

M-CM Network

==Search Engine Optimization and Helping People Find Your Site==

Search engine optimization consists of identifying search terms (or "keywords") that people who are looking for your site are likely to use, and then optimizing the content and code of your website for those terms. Additionally, your placement in search results is impacted by the volume and content of other sites that link to your website. Working on search engine optimization shouldn't significantly alter your activities or site content. Rather, an awareness of the principles of search engine optimization will inform details about how you present your content and interact with other websites.

===Generate A Keyword List===

The first thing to do is generate a list of keywords, or search terms, to target. This list may include all of the disease/syndrome names that your organization covers (including acronyms, abbreviations and variants), significant symptoms or signs, and anything else that a person might punch into a search engine when they are looking for the information that your site offers. You may want to survey some new members to see if they looked for you via search engine and if they remember what words they searched for. Once you have this list, sort it by relevance.

===HTML tags for SEO===

Important html tags for search engine optimization are fairly simple.
* The most important tag is <title>. The <title> tag doesn't actually appear on your web page, but rather in the top of your browser window. It will be used as the title of your search result listing on Google and the default title if your page is shared on Facebook.
* Next are heading tags: <pre><h1>, <h2>, <h3></pre> With h1 being the most important. Survey your site's content for places that you can sensibly fit your keywords into these tags.
* Set a meta description tag for the most important pages on your site and consider using your keywords here. Like the <title> tag, the description tag doesn't display on the site, but it has a lot of utility for other sites that parse your content. Besides search rank, Google uses it to display in it's search results. It is used on Facebook when your page is shared on a user's wall. This tag looks like: <pre><meta name="description" content="My page description." /></pre> Google will display the first 150 characters in the content attribute, you should try to keep the size of your description in that range.

===Incoming Links===

There is much nastiness on the internet due to the fact that incoming links boost search rank. Fortunately for many of us, our search terms are so obscure that we don't have a lot of competition for rank, and a little bit of effort with integrity should go a long way. The most important detail to know is that linking a keyword to your site will be much more powerful than linking a generic phrase like "click here" or "link".
Some simple suggestions:
- If you get media publicity, make sure that any internet version of the article correctly links to your site. If it doesn't, politely request that the link be added. A newspaper is not obligated to to do this, but it's worth asking.
- If you have affected families, fundraisers or board members who have their own blogs or websites, suggest ways that they could link to you if they are not already doing so. You may even want to offer badges that link to your site.

===Other Traffic===

* Facebook has potential for generating valuable traffic to your site, although most Facebook linking will not affect your Google search rank. Add Facebook "like" and "share" buttons to your site. Take a look at the default content that Facebook displays when a page on your site is shared to verify that it's accurate and helpful. This will consist of your <title> tag and meta description OR largest block of paragraph content if you don't have a meta description.
* Wikipedia links also do not contribute to search engine rank. However, when searching on medical terms and syndrome names, Wikipedia results often come up in the top three results. Make sure your organization is linked to from the links section of the wikipedia page/s for your disease. If your disease doesn't have a wikipedia page, make one.
* Be sure your disorder is listed on the appropriate databases, that the information is current and accurate and that your advocacy site is linked to. [[Information about Rare Genetic Diseases|Disease Databases]]

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[People and Roles]]
*[[Recruiting]]
**[[Publicity and General Media]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Social Networking]]
*[[Taking Credit Cards on the Web]]

Working Remotely

2018-07-30T18:50:43Z

Aguise: /* Organizational Tools */

Many advocacy organizations start as a like-minded group of individuals who are willing to volunteer large amounts of time and effort to improve the situation of those affected by a genetic condition. Because a large distance might separate those individuals, and because staff may have other obligations to manage, working remotely might be one of the most logical ways to connect an organization and accomplish tasks on the agenda.

If you have volunteers or staff working remotely, it is important to provide them the tools they need to complete their work and stay connected with the other staff members. If financial duties are part of the job description, make sure the remote staff member has access to the accounts and the means to work with them. If group members are collaborating on a project, there should be a timeline or schedule that everyone can access. There are many tools available!

==Communication Tools==
*[http://www.aim.com/ AIM] - AOL's instant messaging service provides free person-to-person text communication, chatroom messaging, and the ability to share files peer-to-peer

*[[Conference Call Services]] - Conference calls allow multiple people in different locations to participate in the same telephone call.

*[http://www.google.com/googlevoice/about.html Google Voice] - service that provides free computer-to-computer voice and video calls and free computer-to-phone calls in North America, the option to get one Google phone number to connect all of your phone numbers, and an automatic voicemail transcription service

*[https://www1.gotomeeting.com/?Portal=gotomeeting.com GoToMeeting] - online meeting-hosting service; participants can all view the desktop of one host computer

*[http://joinme.com join.me] - free screen-sharing and online meeting tool

*[http://www.skype.com/intl/en-us/home Skype] - service that provides free voice and video calls to other Skype users (including international users); additional features include instant messaging and file transfer

*Webinars - interactive web seminars; usually a live presentation in which a speaker presents information to an online audience who can then participate in the conference through chats, file shares, or computer microphones

==File Sharing Tools==
*[http://box.net Box.net] - file-sharing, content management, and collaboration service

*[http://www.dropbox.com/ Dropbox] - file hosting service that is useful for storing, sharing, and archiving files and folders; free up to 2GB with additional space available for a monthly fee

*[http://docs.google.com Google Documents] - free tool to create, edit, and share work online; documents, spreadsheets, presentations, drawings, and forms can all be created or uploaded, accessed anywhere, and shared in real-time

*Remote Servers - Remote servers allow employees working offsite to access the organization's files and folders. Storing files in a shared drive on a remote server allows these files to be accessed by anyone in the organization, whether or not they are in a main office. Oftentimes, an organization can put the shared area, password protected, on the server used to host this organization's website. A Remote Desktop Server is also useful, as it allows employees away from the office to access all of the applications and data on their office desktop as if they were physically sitting in front of it.

==Financial Tools==
*[https://www.bankofamerica.com/index.jsp Bank of America online] - allows complete account access, with a three dollar charge for transfers without a deposit ticket

*[http://docs.google.com/ Google Documents] - tool to create and share spreadsheets and word documents

*[http://quickbooksonline.intuit.com/ QuickBooks Online] - online accounting service

==Organizational Tools==
*[http://basecamphq.com/ Basecamp] - project collaboration tool that offers to-do lists, milestone management, file sharing, time tracking, and a messaging system

*[http://www.efax.com/?CMP=OTC-us e-fax] - service for sending faxes online

*[https://support.google.com/a/topic/6385920 Google Sites] - easy way to create and share group websites for free; tools include file attachment, organizational calendars, etc.

*[http://www.huddle.net/ Huddle] - team collaboration and project management application; provides file sharing, document management, web conferencing, discussion boards, and more

*Wikis - service that allows the creation and editing of any number of interlinked web pages; often used to create collaborative works

*[http://www.zoho.com Zoho] - portfolio of more than twenty different online applications for businesses

==Recording and Uploading Tools==
*[https://boinx.com/mimolive/ BoinxTV] - tool to create recordings or live videos; allows one to combine live camera video, clips, photos, 3D graphics, lower thirds, audio, and more

*[http://www.apple.com/finalcutexpress/ Final Cut Express] - video editing tool

*[http://www.apple.com/quicktime/download/ QuickTime] - free tool that exports videos to the Internet; exporting with QuickTime creates a master file with three formats: iPhone (high bandwidth), low bandwidth, and desktop

It is useful when exporting videos to export both a Quicktime file and .WMV file (for Windows Media Player), so those without Quicktime can also watch. Once these files have been exported, add links online to both the master file and the .WMV file and upload them to the server.

==Scheduling Tools==
*[http://www.doodle.com/ Doodle] - tool to schedule group meetings efficiently

*[http://www.getklok.com/ Klok] - service to help keep track of time

*[http://www.timeanddate.com/worldclock/ World Clock's Time Converter] - useful site when planning meetings with contributors in multiple time zones

*[http://www.thetimenow.com/worldclock.php The Time Now] - another useful site to determine the time around the world that is also accessible for those with visual impairments

==Internal Links==
*[[Advisory Boards]]
*[[Bylaws and Articles]]
*[[Developing a Governance Board|Governance Board]]
*[[Finding a Lawyer]]
*[[Your Organization's Name Is Important|Organization's Name]]
*[[Staff]]
*[[Tax and Finance]]
*[[Working with a Lawyer]]

Volunteers

2018-07-30T18:49:13Z

Aguise:

You will draw your volunteers from your members and from the community at large. Your volunteer pool may include affected individuals and their families as well as people who are not directly affected by the condition your organization supports but who are interested and want to get involved. They may be able to provide assistance to your organization that will save you money on vital functions, for example, designing educational materials.

Individuals in your community can include family members, neighbors, interns or students from local high schools or colleges, retirees, local professionals and consultants who may be willing to offer pro-bono services, and others.

For these current and potential volunteers, ask:

*Have you actively recruited them?
*What skills do they have and how can you capitalize on them?
*Do they have specific limitations as a result of being affected or of caring for someone who is?
*Can they offer help consistently over time? Or are they best available on a per-project basis?
*Are the roles of current volunteers clearly defined?
*What difficulties do you have retaining them?
*Do you have volunteers you would be better off without?

[https://www.nonprofitrisk.org/areas-of-expertise/volunteer-management/ The Nonprofit Risk Management Center] offers a multitude of resources for nonprofit organizations' volunteer programs.

To learn more about the liability laws in your state for non-profits and volunteers, check out [https://www.nonprofitrisk.org/app/uploads/2017/01/state-liability-laws.pdf this report].

==Internal Links==
*[[Determine Goals|Organizational Assessment: Determine Goals]]
*[[Characterize Resources]]
*[[Characterize Condition|Organizational Assessment: Characterize Condition]]
**[[Leadership|Characterize Resources: Leadership]]
**[[Mentors|Characterize Resources: Mentor]]
**[[Expertise|Characterize Resources: Expertise]]
**[[Vision|Characterize Resources: Vision]]
**[[Funding|Characterize Resources: Funding]]
**[[Media Access|Characterize Resources: Media Access]]
*[[Compare Goals and Resources, with the Characteristics of the Condition]]
*[[Volunteer - Peer Coaches]]

Family Health History

2018-07-17T15:16:38Z

Aguise: /* CCFHH Program Awards */

''A peek into the past can reveal a lot about your future.''

Family health history is the story of diseases that run in your family. It is one part of the entire history of your family. Along with culture, values, environment, and behaviors, family health history influences the way you live your life. Learning about your family health history can help you make healthy choices: it is a cheap, easy way to improve your own health and the health of your family. Share the information you gather with your healthcare provider to further reduce your risk of disease and create a partnership around your health.

==Start Your Own Initiative==
There are many ways to use family health history. To start your own initiative, visit our [[Family Health History Initiative Guidelines]]. These will help to get a new initiative off the ground and provide a lot of information to consider to make your tool maximally effective. For one example of a family health history model, please visit the [http://wiki.hl7.org/index.php?title=Family_Health_History_Overview HL7 International Family Health History Overview.]

For a presentation on how to start collecting your family health history, watch the [http://www.resourcerepository.org/documents/2067/familyhealthhistorycollectiontools:startbuildingyourfamilytree/ Family Health History Collection Tools: Start Building Your Family Tree] webinar.

==CCFHH Program Awards==
In 2008, Genetic Alliance released an [http://www.geneticalliance.org/www.geneticalliance.org/about/pastprograms/ccfhh/RFP RFP] for organizations to use an online tool to customize the ''[http://www.geneticalliance.org/ccfhh Does It Run In the Family? toolkit]'', including "A Guide to Family Health History" and "A Guide for Understanding Genetics and Health." Awardees used the toolkit within existing programs and initiatives to seamlessly integrate conversations about family health history into diverse communities across the country. The Award period ended in 2009, but partners will continue to use the family health history materials in their programs.

[http://wikiadvocacy.org/index.php/Community_Centered_Family_Health_History_Program_Awardees Ten organizations] received awards by adopting the tool in different capacities. Below, you can see samples to guide your efforts after these award-winning models based on criteria that is relevant to or may benefit your organization.

== Target Audience ==
Some of the award-winning organizations adopted the tool for a specific target audience. Click to look at award winners' project reports that were made for a certain:
:*[http://wikiadvocacy.org/index.php/CCFHH_Program_Awardees:_Racial/Ethnic_Group_Target_Audience Racial or Ethnic Group]
:*[http://wikiadvocacy.org/index.php/CCFHH_Program_Awardees:_Disease-Specific Specific Disease Community]
:*[http://wikiadvocacy.org/index.php/CCFHH_Program_Awardees:_Geographic_Target_Audience Geographic Location]
:*[http://wikiadvocacy.org/index.php/CCFHH_Program_Awardees:_Gender_and_Orientation_Target_Audiences Gender and Orientation]

== Systems ==
Some organizations used the tool to supplement a system that they associate with. Click to see their reports that relate to:
:*[http://wikiadvocacy.org/index.php/CCFHH_Program_Awardees:_Medical_School_System Medical School]
:*[http://wikiadvocacy.org/index.php/CCFHH_Program_Awardees:_Employee_Wellness_System Employee Wellness]
:*[http://wikiadvocacy.org/index.php/CCFHH_Program_Awardees:_Community_System Communities]
:*[http://wikiadvocacy.org/index.php/CcFHH_Program_Awardees:_Education_System Education]
:*[http://wikiadvocacy.org/index.php/CCFHH_Program_Awardees:_Specific_Event Specific Events]

== Customization ==
The majority of the program winners were highly familiar with their target audiences and performed the general customizations of the ''Does It Run In the Family?'' booklets. However, two groups held [http://wikiadvocacy.org/index.php/CCFHH_Program_Awardees:_Focus_Groups_for_Customization focus groups] to take their customization to a slightly higher degree.

== Evaluation ==
A handful of program award winners conducted evaluations to examine the impact of the tool. Click to read the evaluations of the projects that used the following methods of evaluation:
:*[http://wikiadvocacy.org/index.php/CCFHH_Program_Awardees:_Evaluation_By_Focus_Groups Focus Groups]
:*[http://wikiadvocacy.org/index.php/CCFHH_Program_Awardees:_Evaluation_By_Papers Papers]
:*[http://wikiadvocacy.org/index.php/CCFHH_Program_Awardees:_Evaluation_By_Surveys Surveys]

== Partnering with Other Organizations ==
Some organizations used or distributed the tool in [http://wikiadvocacy.org/index.php/CCFHH_Program_Awardees:_External_Partnerships conjunction with other organizations].

==Internal Links==
*[[Articles, Letters, and Other Media for Lay Publication]]
*[[Brochures and Fact Sheets]]
*[[Clinician- and Researcher-Focused Materials]]
*[[Newsletters and Bulletins]]
*[[Press Kits]]
*[[Publisher Recommendations]]
*[[Starting Points for Planning Materials]]

Youth to Adult Transition Issues

2018-07-16T17:16:37Z

Aguise: /* Transition Resources */

Major life changes such as going to or from a school environment are a crucial issue for members of many advocacy groups. Here are some resources that may help individuals negotiate these changes.

==PEATC (Parent Educational Advocacy Training Center)==

PEATC is Virginia's Parent Training Institute and Parent Information Resource Center. I work specifically with our RSA (Rehabilitation Services Administration) grant on Transitions, building a foundation of resources and trainings around the process of transitioning students with special needs from high school to "life." (including the four major areas of employment, post-secondary ed, training, independent living skills-where appropriate)

PEATC in partnership with Virginia Commonwealth University's Rehabilitation Research and Training Center has developed a FREE three part webinar series devoted to laying the foundations of understanding in the transition process for students with disabilities, their families, educators and adult service providers. While PEATC is Virginia's PTI and PIRC, the transition information is based upon IDEA (Individuals with Disabilities Education Act) and can be transferable/useful across the US. The webinars have rolling registration, will stream on March 3, 10, 17 at 2pm EST. You may access the archived material at [http://www.nextsteps.peatc.org/peatc.cgim?template=webinars].

Knowing genetic condition and learning disability went hand in hand with our daughter, my hope is for you to pass along this information to families within your organizations and other service providers who may benefit from this free information. Please see attachments for full webinar details and registration.

-Catherine Burzio

PEATC also offers an IEP Checklist iPhone app. School aged students with disabilities are provided an Individualized Education Program (IEP) designed to support their unique educational needs. The [http://www.peatc.org/peatc.cgim?template=IEPChecklistiPhone IEP Checklist App] helps parents of students with special needs become better-informed advocates by making IEP information easier to access. The newest version of the app has active links to the relevant language in the federal regulations; allows users to record the IEP meeting or record notes; and has the capacity to print out notes and click on a checklist as requested items are discussed.

==Transition Resources==

*[http://www.autismspeaks.org/community/family_services/transition.php Autism Speaks Transition Tool Kit] is a free online tool that serves as a guide to assist families on the journey from adolescence to adulthood and includes sections on self-advocacy, community living, post-secondary educational opportunities, housing, and internet & technology. It also describes specific timelines of the transition processes for each state. Families of adolescents and young adults with autism between the ages of 14 and 22 can request a complementary hard copy [http://events.autismspeaks.org/site/c.jqLTI1OxGlF/b.6546161/k.96F7/Transition_Tool_Kit_Request/apps/ka/ct/contactus.asp?c=jqLTI1OxGlF&b=6546161&en=dkLUK5MHKdLYI8OHKdLRI1MIIfKQKbOWLkJYJ7OOLhKZLlP6F here].

*[http://www.fctd.info/show/order_guides The Family Information Guide to Assistive Technology and Transition Planning] is now available free of charge from the Family Center on Technology and Disability (FCTD). The FCTD is a national organization that produces and distributes information on assistive and instructional technologies. Assistive technology can be anything from a simple device to make holding a pencil easier to a sophisticated computer. This 50-page guide is aimed at providing families with the information they need to effectively prepare for and participate in periods of transition in their children's lives and includes sections on Assistive Technology, Transition Planning, Laws governing accommodations in school settings, and a Glossary of assistive technology terms and resources. Order a free copy [http://www.fctd.info/show/order_guides here].

*[http://www.ncwd-youth.info/publications/making-the-move-to-managing-your-own-personal-assistance-services-pas-a-toolkit-for-youth-with-disabilities-transitioning-to-adulthood/ Making the Move to Managing Your Own Personal Assistance Services (PAS): A Toolkit for Youth Transitioning to Adulthood] - Through its Youth Technical Assistance Center, the National Collaborative on Workforce and Disability-Youth (ODEP) is releasing Making the Move to Managing Your Own Personal Assistance Services (PAS): A Toolkit for Youth Transitioning to Adulthood. Whether moving from school or a home setting to work, college, or living on their own, transition-age youth with significant disabilities and their families or friends will benefit from the information in the toolkit. Accessing and maintaining long-term supports, such as PAS, has been a significant barrier to employment for youth with disabilities. This new toolkit assists youth in strengthening some of the most fundamental skills essential for successfully managing their own PAS: effective communication, time-management, working with others, and establishing professional relationships.

*The [http://www.gottransition.org/ National Health Care Transition Center] works to assure that youth with/without special health care needs receive care in a medical home that provides family-centered/youth activated transition preparation, planned transfers from pediatric to adult health care and respectful partnerships

*[http://iod.unh.edu/Services/professional-development.aspx UNH Institute on Disability] hosted the '''2010 Research to Practice Series: The Pathway from High School to a Career: Promising Strategies, Supports, and Partnerships in Secondary Transition''' in April and May of 2010. The series focused on several unique strategies for developing effective, outcome-based educational experiences that promote the successful transition of students with disabilities and students at risk to their chosen post-secondary experiences. The sessions featured distinct content and objectives, including student-directed models support the development of career goals, sector-based strategies that link high school programs to employers and post-secondary education, ways to use assistive technology to improve educational and employment outcomes, and a school-wide framework that allows educators, parents, and students to utilize the emphasized high school reform. The individual workshops were entitled: '''Assistive Technology and Transition''' and '''High School is Transition: A Framework for Reform that Allows Schools to Educate All Students'''.

*[http://www.fyitransition.net/Minicourses/health/level1/player.html Video on Staying Healthy for Youth in Transition] - This video explains to young people with medical conditions or disabilities the importance of taking care of their health as they transition into adulthood and take responsibility for themselves. Includes information on taking medicines, talking with doctors, carrying an emergency health information card, keeping a health care notebook, paying for health care, going to college and planning for accommodations, eating the right foods, exercising and more.

== Resources Created for Youth by Youth ==

National Kids As Self Advocates (KASA) is pleased to announce three new articles and six new youth written and peer-reviewed tip-sheets. KASA is also pleased to offer a toolkit for students, school administration and paraprofessionals (one-on-one aides in the classroom) on creating a good working relationship with a paraprofessional.

Find KASA Articles at: [http://fvkasa.org/reports/index.php http://fvkasa.org/reports/index.php]

Find youth written and peer-reviewed tip-sheets at: [http://fvkasa.org/resources/index.php http://fvkasa.org/resources/index.php]

Or stay current with what’s new at: [http://fvkasa.org/about/whatsnew.php http://fvkasa.org/about/whatsnew.php]

Order the Paraprofessional Toolkit or watch the Webinar/Teleconference sharing about the toolkit on KASA’s main page at: [http://www.fvkasa.org http://www.fvkasa.org]

NEW Articles:

*[http://fvkasa.org/reports/journey.php Bryan's Odyssey: The Story of a Journey] by Bryan Dooley
*[http://fvkasa.org/reports/interdependence.php Using Interdependence] by Micah Fialka-Feldman
*[http://fvkasa.org/reports/surviving.php My Story About Surviving A Hospital Stay] by Sunjay Smith

NEW Youth Created Tip-sheets:

*[http://fvkasa.org/resources/files/history-awareness.php Awareness Through Networking]
This tip sheet will give you advice on how to network, or connect with new people, so that you can teach them about and make them more comfortable with your disability. The more people know about disabilities as a whole, the more disability awareness is spread.

*[http://fvkasa.org/resources/files/ed-college.php Tips For Surviving Your Freshman Year of College]
The transition from high school to college can be hard but fun. In college you have a lot more responsibility to make sure you get what you need. This tip sheet shares what you need to know to survive (and have fun) in your first year of college.

*[http://fvkasa.org/resources/files/history-pride.php Disability Pride: What is it? How can we express it?]
Disability Pride is an important part of advocacy. Wondering how you can have Disability Pride? Read this to learn about the three parts of disability pride; acceptance, community and history and ways to show your pride.

*[http://fvkasa.org/resources/files/cil.php What is a Center for Independent Living?]
Check out this info sheet to learn more about what CILs do and the many ways they can help you.

*[http://fvkasa.org/resources/files/communityservice.php Getting Involved in Doing Community Service]
Check out this tip-sheet for tips, stories and resources about how you can volunteer in your community.

*[http://fvkasa.org/resources/files/ed-funding%20higher%20ed.09.php Funding Higher Education]
Whether you are in grammar school and the word “college” isn’t even in your vocabulary or in high school preparing for college, it is never too late (or too early) to start looking for funds. “Where do I start?” you may wonder. There are many resources available. Check out this tip sheet for ideas and resources on funding college.

==Internal Links==
*[[Autopsies and Tissue Collection]]
*[[Best Practices]]
*[[Conferences, Workshops, and Meetings for Affected Individuals]]
*[[Connecting Individuals]]
*[[Dealing with Death]]
*[[Internet Services]]
**[[Internet Services: Mailing Lists|Mailing Lists]]
**[[Internet Services: Websites, Chat Rooms, and Newsgroups|Websites, Chat Rooms, and Newsgroups]]
*[[Phone Services: Going Beyond the Phone Tree|Phone Services]]
*[[Protecting Member Privacy]]
*[[Setting Up A National Conference]]
*[[Support for Individuals and Families]]

Social Networking

2018-06-29T17:50:14Z

Aguise: /* How do I keep up? */

Social networking sites have seen a dramatic increase in popularity, leaving many advocacy organizations wondering the best way to engage with and integrate this technology into their organizations. Information on [http://www.facebook.com Facebook] is shared below, but feel free to help us expand and include information on other social networking sites, such as [http://www.myspace.com MySpace] and [http://www.twitter.com Twitter].

Social media can be a very useful tool for interacting with your community. Many organizations use social media (e.g. Twitter, Facebook and others) as a broadcast communication tool, updating their community and thepublic about progress or new developments with their registry or biobank. This is just the beginning. Social media can also be used strategically to listen to and engage with your community. [http://www.slideshare.net/Radian6/30-ideas-for-your-2012-social-media-plan Radian6] has created a wonderful resource, 30 ideas for your social media plan in 2012 that provides insight on how to use social media more effectively. Once your social media plan is in place, be sure to [http://blog.kissmetrics.com/science-of-social-timing-1 time your posts] for when your audience is most likely to be listening.

== Facebook ==
=== Where do I start? ===

Facebook has many different ways to be involved as an organization, such as Causes and Groups. It might be easiest to just start with your own personal profile so you understand what your constituents are seeing from the user side. "Friend them,"
watch their behavior, what attracts, what doesn't, join Cause Pages and Fan Pages of other non-profits and get their updates and announcements on Facebook and you'll pick it up. Or find a constituent/volunteer who's already "into it" and ask them to be a "virtual" volunteer leader of your Facebook presence to grow it organically. This [http://www.connectioncafe.com/posts/2009/february/things-to-do-in-facebook.html article] also discusses how non-profits can begin to use Facebook in general. To learn more about Facebook pages, you can read [[Media:Facebook_Pages_Insider's_Guide.pdf|"The Insider's Guide."]]

The following is one organization's take on how to use Facebook:

Eleni Tsigas

Preeclampsia Foundation

"When you do a Facebook Ad, including Boosted Posts, you can run it to current fans or with an exception criteria that does not include your current Fans. That being said, I would hesitate to boost ANY post unless there was a specific drive/aim in us doing so. Boosting it just to get visibility with no call-to-action is not an effective use of money. Driving general Likes on the other hand, does serve us well and is worth the investment, though if you ever got to the point where you had exhausted potential clients, I would recommend that you take a break for some time.

In addition, Facebook (and social media in general) raises AWARENESS, not funds. Email marketing is much better suited for that purpose, and better yet, peer-to-peer requests. Facebook does, however, remind people of important things like "Oh, I should go register for a walk and start fundraising." People make the mistake of assuming it is a panacea instead of one more tool in the communication arsenal.”

*'''Causes''' 

To become Causes NonProfit Partner, visit [http://nten.org/uploads/09ntc/presentations/Welcome%20to%20Causes%20NPO.pdf here]. Any Facebook users will be able to see all your NonProfit's Cause Pages in one place that looks like [https://apps.facebook.com/causes/ this]. But the NPO as an entity won't be able to manage relationships with these User-created Cause Pages without this approval from the Cause Application Company, Project Agape.

As an approved Partner, you'll be granted access to a different background ADMIN page that through a portal page that only organizations are be able to access. From there, you'll be able to "designate" which of all the Cause Pages out there is the "official" Cause Page of the organization from that ADMIN area. You can still need to create your own Cause page from the User side as a leader of the organization and then designate THAT one as the "official" Cause page. Or choose None as "official" and just receive donations as the chosen beneficiary of the multiple pages created to support your cause.

You'll also have options from your ADMIN area to "Manage Causes" and can "disassociate" any that you don't want to be associated with your Cause. You can also "Manage Donations," where you can see all your donors, download reports to add them to your donor database, have options for "thank them" using Facebook, etc. One point to be aware of: The official Causes Partner reports often list as Anonymous some contributions for which an individual donor is identified on the specific Cause page where the donation was made.(This depends on which box the donor checks at the time of the donation.) Unless you keep track of each associated Cause page, you will miss the opportunity to thank some donors who are identified on the individual Cause page but not on the Causes Partner reports. You can also administer Cause Petitions within your ADMIN area where you appeal for people to "sign" a collective petition advocating for some sort of change.

Then encourage any of your constituents who want to create their own Cause Page to do so and ALL of them can be set to "benefit" your 501(c)(3). Anyone can create a Cause page if they add the Cause application to their Facebook Profile. They can join lots of Causes and create multiple Cause pages for causes they care about. They "choose" who their Cause page will benefit from any nonprofit organization that is listed in [http://www.guidestar.org Guidestar database].

Then keep creating ways in your campaigns/appeals/advocacy alerts to give your constituents a way to viral your message to everyone on their Cause page with "canned" text/graphics/links back to page on your website and you've got a movement.
People always respond best to appeals made by people they know. Empower your constituents to be ambassadors of your messages. They get the experience of helping the cause they care about and have passion to share with others they know. You get people to reach more people with your appeals for the cause than you would ever reach in a top-down message delivery strategy.

More good information about Causes can be accessed from Facebook's [https://apps.facebook.com/causes/ Causes' FAQs] and [http://apps.facebook.com/causes/about?m=736620da here].

*'''Groups''' 

Facebook Group pages are very easy to create also, but are more like an open or closed online group meeting space. Doesn't
have near the tools for NPO communications and outreach and fundraising, but it has it functions. We have a group page for volunteers [http://www.facebook.com/groups.php?ref=sb#/group.php?gid=11572144041 here], but we haven't done a lot with it except let it grow and share "news" posts and links. It's still grown to over 600 in last year.

An idea for patient privacy is to open your group page only to those who have signed up as members of your Association.
Those who are NOT members, can be messaged as to their affiliation (I have a sister with this disease, my child has this disease…)
The message is sent by going to the inquirer's own FB page and clicking on SEND A MESSAGE.
It not only helps with patient privacy, but provides new members.

The only drawback to this system is if the person does not have the message ability
on their FB page when one goes to message them to ask their affiliation….

Also, there are sometimes patients who, for various reasons, start another FB page
on the same disease… these are usually not a big draw from the "official" disease page and
serve a purpose for their group. One can ask them to be a Friend, posting when
appropriate on these other pages, but not so often as to appear to be FB-stalking them.

* 10 Tips for Non-Profits on Facebook -
http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook

*'''Discussion following #deleteFacebook in 2018''' 

---"The HLRCC Family Alliance has wrestled with the use of the Facebook Group and other forums for some years.
We made the Facebook group secret which means that not only are posts private, but the member list is also. As it is not found by search people have to find it via the website and send an email to contact and receive an invitation to join. Or people can add family and Facebook friends.
We were finding nevertheless that there were limitations on long-term functionality with older posts being difficult to find if longer than a year or two old.
About three years ago an organisation called Smart Patients was started from a previous list forum called ACOR. It supports all medical conditions with a set of communities and we created one for HLRCC.The admin and IT support are second to none. We have encouraged the Facebook group to become members and about two thirds have 200 out of 300
The Facebook group continues but we have people in Smart Patients with no Facebook account so we have some cross communication issues."

---"I’m glad to see you mentioning Smart Patients. I recently joined Smart Patients because of a health condition with which I was diagnosed. From the patient perspective, it seems superbly run, though I know absolutely nothing about what happens behind the curtain. I recently heard something that stuck with me. It was on a NPR program about Facebook moving to a pay for service model. “If you’re not PAYING for the product, you ARE the product.” One concern I have about Smart Patients is that, like Facebook, it does share anonymized data with third parties without the consent of members: https://www.smartpatients.com/faq#what-is-smart-patients."

---"When I was in charge of social media for The XLH Network, Inc., I resisted creating a Facebook group, for all the reasons that are now being addressed -- concerns about privacy, even in a closed group; the lack of email addresses for our database (so we didn't "own" the membership -- Facebook did); and dividing up our community into a variety of platforms. I don't know for sure that it was the right decision, but at least it meant that the Network has always had an alternative to Facebook in place.

The Network started as a listserv, and then the membership transferred to a forum. Unfortunately, forums aren't as easy/convenient to use as Facebook (although they offer a lot of benefits, including being able to organize responses by topic, which makes them highly searchable, and you can collect a lot of advice on repeat topics over the years), so it's difficult to get engagement there. But at least the nonprofit retains ownership of the membership, which it doesn't have with any interactions on Facebook, .

Since we had a forum already, we didn't need a platform like SmartPatients or PatientsLikeMe.com, and creating accounts with them would have split our community even further (some at Facebook, some at the Network's forum and some at these other platforms). Personally, both of those options worry me in much the same way that Facebook does, since they're FOR-PROFIT entities, based on their dot-com URLs.

To some extent, in this day and age, it's necessary to split the community and offer a variety of platforms for discussion -- some people just won't use a forum and some just won't use Facebook, and so on. (We considered creating a Google group, but just didn't have the experienced personnel to monitor it, and all platforms need monitoring.) So the Network maintains a Facebook page, but encourages taking private discussion over at the forum.

Just to throw out another concern with Facebook -- a few months ago, some consultants started stalking our patient community on Facebook. I don't even know how they did it, because I wasn't able to duplicate their search results, but they were able to find out who on Facebook mentioned XLH in their PRIVATE timelines/profiles. The consultants then sent private messages to those people to ask them to participate in some research. At first, we thought they were scraping info from people who posted to the Network's page, which was bad enough, but it appeared to go beyond that, to people who had never posted to the page, but mentioned XLH in their private timelines. I still don't know how they did that, but it's worrisome."

---"Our Facebook group pre-dates the organization that I run. I am heavily invested in it, but it’s not under our organization. I think for now it will continue to be most appropriate for our condition. I see a lot of benefits to the FB platform for our patient families - the cross talk with groups for comorbidities and the ability to message and friend other families. I’ve learned a lot about other patients from what they post outside of the group, just seeing their everyday lives, that helps me as a caregiver and as an advocate. That is one thing that you would never get from a stand alone forum. That said, it’s pretty clear that Facebook doesn’t really care about group users and there are plenty of frustrating things about the features for groups.

I’ve set up Vanilla Forums for another organization:
https://vanillaforums.com/en/software/
We set up the self-hosted open source product, so it is free but has to be maintained. I think for most groups I’d recommend using their paid, hosted product though. It’s not cheap. I wonder if they may have some flexible pricing for non-profits though.

The Chordoma Foundation launched a community recently on this platform
https://personifycorp.com/small-world-community/
I’ve been curious about that but don’t know anymore than what they have publicized about it.

I signed up for SmartPatients to check it out and registered for a group (or tag in SP) for a brain condition relevant to our syndrome. I found it mildly glitchy (not terrible, but not thrilling either) and the group had seen very light use. I found that via tags in posts, I could access other conditions that I’m not sure I was supposed to be able to access. I think it could have potential, but it seemed like it may have lost momentum to me.

I think this is an interesting conversation, I’d love to see better platforms for our groups flower. But for us there’s not a strong need yet I think."

---"We have been struggling with this as well for several years now. The largest and most active private FB group for our patient community was started by a group of patients and is not administrated by us or any organization. From the very beginning I have been struggling to figure out community forum options because I never felt comfortable with a private FB group for all the reasons already stated here. So we did start a Smart patient community, but it hasn’t gotten the traction we had hoped.

We have discussed this often with the Genetic Alliance to see if there was a solution as part of the PEER platform. Since it is non profit and already has some strong privacy built into it, perhaps if enough of the groups on the PEER platform are interested it is something we could pursue.

Our other thought is to see if building out a private community forum from our CMS vendor is an option, so that we do have ownership of the members and can put privacy assurances into place. Has anyone gone this route?"

== SmartPatients ==

"About three years ago an organisation called Smart Patients was started from a previous list forum called ACOR. It supports all medical conditions with a set of communities and we created one for HLRCC.The admin and IT support are second to none. We have encouraged the Facebook group to become members and about two thirds have 200 out of 300 The Facebook group continues but we have people in Smart Patients with no Facebook account so we have some cross communication issues."

"I signed up for SmartPatients to check it out and registered for a group (or tag in SP) for a brain condition relevant to our syndrome. I found it mildly glitchy (not terrible, but not thrilling either) and the group had seen very light use. I found that via tags in posts, I could access other conditions that I’m not sure I was supposed to be able to access. I think it could have potential, but it seemed like it may have lost momentum to me."

"SmartPatients has the concept that all conversations of all communities are accessible instead of having a separate silo for each condition. People can be members of several communities and can follow tags that they are interested in. This means that for example information about a particular drug side effect can be found across conditions. It is very open to any suggestion for improvement via a Site Feedback tag. You will always get a personal reply."

==Twitter==

===Introduction===
Twitter is a social networking site that begins with the question, "What are you doing?" Twitter is much more streamlined than facebook; user profiles are limited to name, location and a 140 character bio. Twitter status updates or "tweets" are also limited to 140 characters. They can include links to outside sites but cannot included embedded photos, video or other content. Twitter users can upload a profile picture and [http://mashable.com/2009/05/23/twitter-backgrounds/ create a customized background] for their page but cannot make further customizations.

===Terminology===
'''Tweet''': A message/status update on Twitter of 140 characters or less.
 '''@''': Putting the @ sign before a twitter username (i.e. @geneticalliance) will create a link to that person's Twitter page within your tweet
 '''RT''' or '''Re-tweet''': When a user re-broadcasts a tweet written by someone else. These posts usually begin with "RT @twitteruser:" to give credit to the person who wrote the original tweet.
 '''List''': Twitter users can create lists of other users on any subject they like such as [http://twitter.com/jacobscure/non-profit-resources Non-profit Resources] or [http://twitter.com/jacobscure/rare-disease Rare Disease]. Other users can follow these lists, gaining attention for the person who created the list and saving them from having to do the leg work of finding and adding all the different users tweeting on that topic.
 '''Hashtag''' or '''#''': This is a way of denoting a keyword of conversation topic. The word after the hashtag is clickable and will bring you to a display of every other Tweet which contains the same hashtag. These can be used to create a meta-dialogue or to track the conversation about a certain topic. Sometimes groups will schedule chats on Twitter, which are identified by a specific hashtag. Users can join in the chat just by clicking on the hashtag or by using a third-party site such as [http://www.tweetchat.com Tweet Chat].

===Twitter Clients===
A Twitter client can often provide more features and functionality than the main website. Although your content still appears on Twitter, and is still subject to the same limitations, a small line underneath your post will let others know what client you are using; i.e. "via TweetDeck." Some clients allow you to manage more than one Twitter account from the same place, and many will also let you update Facebook, LinkedIn and other social media sites simultaneously. Some also allow you to schedule your tweets to post at a later time.

Here are some popular Twitter clients:
*[http://www.hootsuite.com Hoot Suite]
*[http://www.tweetdeck.com Tweet Deck]
*[http://www.tweetmeme.com Tweet Meme]

===Best Practices===
'''Follow people who follow you''' - If someone follows you, it is considered courteous to follow them back. If you are concerned that following too many people will clog up your Twitter stream, create a list of those most important to you so you don't miss out on anything they are saying.
 '''Re-tweet''' - It's that simple. If someone says something funny, interesting or thought-provoking, share it with your network. It's a great way to get them to notice you and maybe remember you the next time you want your own content re-tweeted. Always make sure to start a re-tweet with "RT @username:" Twitter doesn't do this automatically when you click the re-tweet button; if you just click the button, your RT won't show up in their @ feed, so you won't get credit for helping out!
 '''Get involved in the dialogue''' - Twitter is not a place for wallflowers. It's also not a place to constantly promote yourself or your brand. There is a place for that, but self-promotion should make up less than 10% of your tweets, on average. If you participate in the conversation and post content that is valuable to your followers, you will form lasting relationships which can translate to valuable partnerships on the web and in the real world.

Read the article, [http://www.openforum.com/idea-hub/topics/lifestyle/article/when-tweets-go-wrong-and-how-to-do-it-right-jean-chatzky?cid=em-smartbrief When Tweets Go Wrong - And How to Do it Right] to learn about how a company handled its mistake and for more tips.

==Discussion Forums==
===Teen Discussion Forum===
Teen discussion forums are online discussion sites for teenagers to share their stories and experiences with one another. People participating in the forum may cultivate social bonds and interest groups from a topic made from the discussions. Since participating teenagers will most likely be underage, it will require a different set of development and maintenance methods than the ones used for a regular discussion forum. Here are several issues to consider:

'''Who would be the administrator for such a site?

An administrator is necessary for two reasons:
*Kids might end up inadvertently submitting incorrect medical information that could then go viral
*There is the risk of improper posts (sexual, harassing, flaming content…)

'''Should a Listserv or a chat area be offered?

Again, both would require supervision and the time and effort of a staff member.

'''What other issues do I need to look out for?

There is a great deal of liability involved when dealing with any activity including minors. Some cyber insurance would not cover such an undertaking – at least not without resistance and a costly rider.

==How do I keep up?==

Tips provided by Jim Moore

'''Facebook'''

I did several things to keep track of FB activity—this is my plan. If it doesn’t work for you, please ignore it:

# Regular searches for new groups and pages. Use the same search engine word strings you’d use on Google and mix them up. You will find them.
# Join the groups...and be forthright about who you are.
##If the groups refuse to admit you, infiltrate with another volunteer who is “just a parent.” Don’t use official organization reps for this. Just pick a “friend” you trust who’s not on the board or a committee, etc. and have them join.
# Turn on “notifications” for each group. Turn on “email” in your notifications settings. Select ALL posts to the group for notifications.
## Prepare for a deluge of email notifications.
##Note that threads have “subject” lines, so if a thread does not pertain, sort by subject and delete the whole lot of ‘em.
#Skim ALL subject matter looking for “opportunities.” (Prioritize to those message threads where real expertise is required.) I define opportunity as:
##Newbie looking for solid info;
##Misinformation;
##“I dunnos”
##And so on.
##Above all, wait for “critical mass” to build in the message thread. If you respond to the initial post, only the questioner will see it. Wait until 15 or 20 people have chimed in and then drop it on ‘em. Thread participants will ALL get a notification of another post to the thread, and they’ll all benefit...and from an organizational marketing point of view, they will all see your organization in action at its best. (obvious exception would be for a critical item where time is of the essence...e.g. prenatal diagnosis or life-threatening situation or “the meeting at the school is tomorrow!”)
#Generate boilerplate. Nothing is more time-consuming than writing the same thing over and over again, and freelancing every response introduces the opportunity for mistakes and omissions.
## Remember: there are really only 10 to 20 questions – asked over and over again – perhaps many permutations, but the right guidance is still the right guidance.
##Create a library of boilerplate by subject.
##Save them in MS Word or similar so you can just open the file, copy and paste.
##Embed links to info on your website prolifically. Drag them to your organization, and use the boilerplate as a preamble to say “find this here and find that there.”
###My philosophy is to never simply hand it to them. Instead, act like a library and have them come and get it. This way, they learn about the library, and they know to come to the library next time they have a question.
##Disclose that it’s boilerplate with a custom intro such as, “[Name], We have guidance on this subject. This is a far more comprehensive response that your answer may require, but you may find it helpful. You may wish to save this for future reference. [insert boilerplate]. At the end of each boilerplate response, remind the reader that it’s boilerplate and point them to where they can find more info.
##Name the files “boilerplate-[subject}” so you can find them using Windows Explorer search tools.
##Keep the boilerplate up-to-date. This is more work than it might seem, because most boilerplate ends up littered with hyperlinks to docs on your site and elsewhere, and much of the baseline guidance needs regular review.
##Don’t be afraid to be comprehensive. I always got rave reviews on the boilerplate and many “secondary” thank-yous from other readers in the thread.
#Be strategic. Don’t “helicopter.” Respect the group and just “show up big time” when it really counts.
#ASK PERMISSION: before posting things like events, research recruitment, fundraising and so on. Most will be accommodating, but if they say “no fundraising” or “just the specific variation we serve”, it’s their group.
#DEBATE: inevitably you’ll encounter some preposterous nonsense or another that can’t be ignored. Debate vigorously but respectfully, and then TRUST THE AUDIENCE to know the difference between nonsense and solid info. Your debate “opponent” will never admit being wrong or admit “defeat,” so that’s not a goal. Make your points well and respectfully, then walk away. (easier said than done sometimes, and this is NOT my forte’) J.

You just read all that. I don’t have to tell you that it’s tons of work. But so is a conference, creating a website, publishing booklets and so on. This is currently where the people are (social media), and you need to go to where the people are and meet them on their turf.

Get help. If you have several volunteers you truly trust, give them your login. Yes, let them impersonate you....within strict guidelines. This is the beauty of boilerplate. The words are tried and true...vetted. Your surrogates are just that...clones who have strict marching orders. And because they are using “your” accounts and memberships, you can see everything they do as they do it. Supervise and train. It will pay off quickly and give you time to focus on other things while still having a huge (or in today’s political vernacular Yuuuuge!) social media presence.

'''Twitter'''

Twitter is even bigger than this, and it involves lots of one-on-one engagement to build followers and pay your dues with those followers. Suffice it to say that Twitter is all about mutual back scratching. I’ll reserve that for another time.

'''Use Multiple Social Media Profiles'''

If you are using your personal profile, the one with photos of your cat and thoughts on the upcoming election, stop. You’re bound to alienate lots of people with your “other” posts.

Your organization profile should be utterly bland on every front other than the organization’s mission.

Create a new, organization-specific profile and use it exclusively for the organization’s messages. Then create a second profile in case Facebook gives you a “time out” for misbehavior of some sort. (too many friend requests, too many duplicate posts to too many groups, etc.) I have two professional profiles:
#First Name Last Name
#First Name Executive Director
They are otherwise identical in virtually every way, so readers really can’t tell one from the other.

How to develop a “split-Facebook-personality.” This “boilerplate” was written to guide people who are concerned about privacy to create unique profiles to use exclusively for the condition groups. But the principles are the same in terms of creating your professional profile for the organization: http://www.genetic.org/Portals/0/Public/Docs/Protect%20Your%20Privacy%20with%20Multiple%20Facebook%20Accounts.pdf

Using these methods, I was able to actively participate in approximately 25 Facebook groups worldwide (including 4 condition-specific groups where I was admin), multiple Facebook pages, and 3 Twitter feeds with thousands of followers.
I used “push” tools in Constant Contact to push content to the pages and Twitter, and then I relayed that content to “friendly” groups worldwide. All of that content was very easy to distribute, and the degree to which it was welcomed was directly related to the relationships developed with the other independent groups’ admins.

==Recommended Links==

*[http://www.casefoundation.org/social-media-tutorials The Case Foundation's Social Media Tutorials]
*[http://www.cdc.gov/healthcommunication/ToolsTemplates/SocialMediaToolkit_BM.pdf?s_cid=tw_eh_135 CDC's Health Communicator's Social Media Toolkit]
*[http://www.youtube.com/t/ngo_tips YouTube Tips for NGOs]
*[http://ow.ly/35h1M Social Media: Tips and Tricks.]
*[http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook/ 10 Tips for Non-Profits on Facebook]
*[http://www.blogtips.org/ Blog Tips for Non-Profits]

If you would like to see examples of social media pages, visit Genetic Alliance's pages:

*[http://www.facebook.com/group.php?gid=15453400385&ref=ts http://www.facebook.com/group.php?gid=15453400385&ref=ts]

*[http://www.linkedin.com/companies/genetic-alliance http://www.linkedin.com/companies/genetic-alliance]

*[http://twitter.com/geneticalliance http://twitter.com/geneticalliance]

*[http://www.youtube.com/geneticalliance http://www.youtube.com/geneticalliance]

== Questions and Answers ==

*'''''How has your organization responded to requests from families who want to start a group on Facebook? Is it better to start one as an organization in order to keep control?'''''
** We did start our own Facebook Group and Cause so that we would have some control. We have raised a couple hundred dollars on the site (with literally no work).
**We have a Facebook Causes page and our members have their own Facebook pages. Then they can join our Facebook cause and leave comments and such on the cause page and information on their own pages.
**I think there are several issues to think about here. One is whether you can show up on every blog, online group, MySpace or Facebook venue. I think they are just going to proliferate & at some point you can't control the space/content/representation. The terms and conditions of these online spaces are widely variable. In some everything that's shared/written becomes the property of the sponsor who can edit, use, re-publish or use for publicity. There is no privacy, no ownership, no accountability. Though they seem like "safe spaces", many of them are filled with both spammers and porn folks. Also, many sites are searchable by google or other search engines. Cyberspace is notoriously hard to control, if control is a top priority of the organization. That too requires an investment to maintain. On the other hand, presidential candidates have gotten elected recently using these social networking tools successfully and raised $500 million online, largely from people giving $100 or less.

*'''''What happens if other Facebook Groups or Causes exist for the same condition as mine?'''''
:We as an organization (Cystinosis Research Network) started a Facebook cause (which was very straightforward to do) under the title "Cystinosis". We've raised a few hundred dollars and have had nearly 1,000 join the cause with almost no effort.

:We've recently run across another cause for cystinosis which was started by someone we aren't familiar with. Donations are going to the other advocacy group in the U.S., which is fine, except he used our logo, website address and vision and mission information. I've "facebooked" the cause administrator just to point out the inconsistency and the confusion it might provide for possible donors with no response back.

:Finally, one of our medical advisory board members decided to start a CRN Facebook cause herself, as she didn't find CRN when she searched (our fault, should have titled our cause "CRN" specifically, not the general "cystinosis"). Donations from her cause go to CRN, and frankly, she did a much nicer job than us in setting it up! We've decided that having the two sites is complimentary in the end.

:I guess my point is that Facebook is a fairly uncontrolled space, putting your organization as a cause can provide very easily collected modest donations and raise awareness, but there is always the possibility (as in many situations, I suppose, like blogs, etc.) where other individuals can use information from your organization without your knowledge, which may or may not lead to any significant misunderstandings or harm.

*'''''How does a group go about getting permission to use photos from conferences on social media websites and in enewsletters? Additionally, if photos are used on Facebook, how does 'liking', 'sharing', and 'tagging' interact with privacy violations?'''''

:*Team Sanfilippo has a Facebook page and a private MPS community page as well. We have put posts up on occasion asking permission and parents have responded in several ways. Some have said use whatever you see online of my child, others have sent us a few pictures and and some have said to take anything from their child's personal site we want. So we print those threads out in case of an issue down the road. We've never run into any issues so far.
:*We have a photo/video release at our conferences that we ask families to sign, which basically is a waiver for any electronic or print distribution. However, sometimes families just send us photos via email, etc., to be used in our newsletter and don’t necessarily provide a formal release. For many years before we had an electronic newsletter, the pictures were used in our print newsletter. However, we have now decided to implement a policy wherein we obtain a formal release for use of any photos submitted by any mechanisms. I do have to make the disclaimer that we try not to identify any minor by name in photos. We do have a FB page, and we have “turned off” the ability for anyone other than the administrator to upload photos and our policy is not to upload any photos organizationally of patients. We also have a private password protected online community which does allow the user to upload pictures to their personal page. The community use agreement contains a disclaimer to the effect that although the site is private and password protected, we are not responsible for and cannot protect against the potential use of the photos outside the online community (because a member copies it and uses it elsewhere).

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Blogging]]
*[[Building a Website]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[People and Roles]]
*[[Recruiting]]
**[[Publicity and General Media]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Taking Credit Cards on the Web]]

Resources for School Success

2018-06-22T18:58:55Z

Aguise:

School can be overwhelming for anyone, but with a little extra planning, fears can be eased for children with special healthcare needs and genetic conditions. Check out some of these great resources and add your own!

*'''[http://www.geneticalliance.org/sites/default/files/publicationsarchive/attending_with_genetic.pdf Attending School with a Genetic Condition: A Guide for Parents (PDF)]''' This Guide provides information that may be helpful when writing a letter or when preparing to meet with your student’s teacher, school nurse, and physical education teacher or coach. In addition, this resource includes ideas for how your child can talk to classmates or peers about his or her genetic condition.

*'''[https://fcsn.org/newsline/v31n4/spring2011.pdf Do's and Dont's for Teacher-Advocates]''' - This article published by Newsline is a guide for teachers of children with special needs who wish to advocate effectively for their student without endangering their careers.

*'''[http://www2.ed.gov/parents/needs/speced/iepguide/index.html Guide to the Individualized Education Program]''' - The purpose of this guidance is to assist educators, parents, and state and local educational agencies in implementing the requirements of Part B of the Individuals with Disabilities Education Act (IDEA) regarding Individualized Education Programs (IEPs) for children with disabilities, including preschool-aged children.

*'''[https://docs.google.com/fileview?id=0B9EOfg1w7YqGYjUxOTAwMTYtNWMwYi00YzY3LWJmODQtOWY5YjBhNjVjZjM1&hl=en&pli=1 IEP Goal Bank]''' - In preparation for your child's IEP, check out this listing of sample goals.

*'''[http://www.ldonline.org/article/37640 The IEP Team]''' - Who's on the team? What is each member responsible for? What can I bring to the table? Find out about the various roles and why writing an effective individualized education plan is dependent on teamwork.

*'''[https://primaryimmune.org/wp-content/uploads/2015/01/IDF-School-Guide-3rd-Edition-2015-FINAL.pdf Immune Deficiency Foundation School Guide: Information About Students with Primary Immunodeficiency Diseases (PDF)]''' - A very comprehensive guide that covers such topics as educational rights, special considerations, and sample forms in addition to information about the condition.

*'''[http://www.ldonline.org/features/idea2004 Individuals with Disabilities Act Review]''' - The Individuals with Disabilities Education Act is a complex federal law that affects your child directly. Take another look at the history, purpose, and components to be sure you understand your rights and responsibilities.

*'''[http://www.ncwd-youth.info/publications/the-411-on-disability-disclosure-a-workbook-for-youth-with-disabilities/ The 411 on Disability Disclosure: A Workbook for Youth with Disabilities]''' - This workbook is designed for youth and adults working with them to learn about disability disclosure. It helps young people make informed decisions about whether or not to disclose their disability and understand how the decision may impact their education, employment, and social lives. Based on the premise that disclosure is a very personal decision, the Workbook helps young people think about and practice disclosing their disability. It is available in PDF, Word document, and in audio as an MP3.

Resources for School Success

2018-06-22T18:44:03Z

Aguise:

School can be overwhelming for anyone, but with a little extra planning, fears can be eased for children with special healthcare needs and genetic conditions. Check out some of these great resources and add your own!

*'''[http://www.geneticalliance.org/sites/default/files/publicationsarchive/attending_with_genetic.pdf Attending School with a Genetic Condition: A Guide for Parents (PDF)]''' This Guide provides information that may be helpful when writing a letter or when preparing to meet with your student’s teacher, school nurse, and physical education teacher or coach. In addition, this resource includes ideas for how your child can talk to classmates or peers about his or her genetic condition.

*'''[https://fcsn.org/newsline/v31n4/spring2011.pdf Do's and Dont's for Teacher-Advocates]''' - This article published by Newsline is a guide for teachers of children with special needs who wish to advocate effectively for their student without endangering their careers.

*'''[http://old.epilepsyfoundation.org/living/children/education/schoolforms.cfm?renderforprint=1& Forms for School Nurses and Parents]''' - The sample forms linked here provide guidelines for collecting data relevant to educational planning for students with epilepsy and can be adapted to meet individual and institutional needs.

*'''[http://www2.ed.gov/parents/needs/speced/iepguide/index.html Guide to the Individualized Education Program]''' - The purpose of this guidance is to assist educators, parents, and state and local educational agencies in implementing the requirements of Part B of the Individuals with Disabilities Education Act (IDEA) regarding Individualized Education Programs (IEPs) for children with disabilities, including preschool-aged children.

*'''[https://docs.google.com/fileview?id=0B9EOfg1w7YqGYjUxOTAwMTYtNWMwYi00YzY3LWJmODQtOWY5YjBhNjVjZjM1&hl=en&pli=1 IEP Goal Bank]''' - In preparation for your child's IEP, check out this listing of sample goals.

*'''[http://www.ldonline.org/article/37640 The IEP Team]''' - Who's on the team? What is each member responsible for? What can I bring to the table? Find out about the various roles and why writing an effective individualized education plan is dependent on teamwork.

*'''[- https://primaryimmune.org/wp-content/uploads/2015/01/IDF-School-Guide-3rd-Edition-2015-FINAL.pdf Immune Deficiency Foundation School Guide: Information About Students with Primary Immunodeficiency Diseases (PDF)]''' - A very comprehensive guide that covers such topics as educational rights, special considerations, and sample forms in addition to information about the condition.

*'''[http://www.ldonline.org/features/idea2004 Individuals with Disabilities Act Review]''' - The Individuals with Disabilities Education Act is a complex federal law that affects your child directly. Take another look at the history, purpose, and components to be sure you understand your rights and responsibilities.

*'''[http://www.ncwd-youth.info/publications/the-411-on-disability-disclosure-a-workbook-for-youth-with-disabilities/ The 411 on Disability Disclosure: A Workbook for Youth with Disabilities]''' - This workbook is designed for youth and adults working with them to learn about disability disclosure. It helps young people make informed decisions about whether or not to disclose their disability and understand how the decision may impact their education, employment, and social lives. Based on the premise that disclosure is a very personal decision, the Workbook helps young people think about and practice disclosing their disability. It is available in PDF, Word document, and in audio as an MP3.

Dealing with Death

2018-06-22T18:21:55Z

Aguise:

Organizations often struggle with how to provide for families who have lost a loved one to the condition and still offer hope to the families who are struggling to hang on to hope. Though not as dramatic, the same tension is felt by many organizations when the newly diagnosed hope for a mild course of the condition and the veterans need support because of the severe changes in their lives. These losses require a delicate touch. Advocacy organizations are often able to draw on their members' experiences and provide both kinds of support and the continuum in between.

One organization describes its perspective:

:Jim Moore
:AXYS

"Death of a member or member’s child doesn’t affect AXYS in precisely the same way as it does many other organizations. Those we serve have a life expectancy just a few years shorter than normal. But there are comorbid conditions – cancers and others – that arise more often, and when 'one of ours' is taken early, especially by one of these comorbid conditions, we memorialize the loss and celebrate the person’s life. Since most of those who die of illness are adults, they often lead the way by sharing their experiences as they unfold.

These losses are difficult, because they not only remind us of the additional health risks associated with X and Y chromosome variations, but because they also remind us of the additional challenges those we serve those we serve may endure throughout life. Some losses are particularly tragic because many are bullied throughout life, some to the point of being assaulted and murdered. Those cases are especially difficult to accept. But each situation is an opportunity to build community and educate. The vast majority of loved ones of the deceased will take the lead in memorializing the person as a way to raise awareness."

Whether your organization supports a genetic condition that leads to early death or does not have any impact on life expectancy, you may wish to consider two aspects of preparing for the death of a member: acknowledgment of the passage and support opportunities for family members. Although few of us are enthusiastic about creating procedures for this type of event, having a procedure or policy in place can give a comforting sense of knowing, at least, what to do next.

Acknowledgment of death can take two primary forms: immediate responses on the part of the organization (such as a card or gift to the family) and/or memorial activity in a public forum, perhaps at a regularly held meeting or as an announcement in your organization's newsletter.

Support for grieving families can take a variety of forms, too, from a simple personal expression of condolences from a group member to substantial commitment of time and resources to provide active support to family members. Where your organization falls in this continuum will likely be influenced by the severity of the condition and may be influenced by the cause of death. We don't mean to suggest that a car accident is less deserving of support for survivors than a death related directly to the condition your organization supports, but it's reasonable for your organization to make decisions about how much effort it is able, fairly, to offer in this area.

Here is an example of what one organization does:

:Jana Monaco
:Organic Acidemia Association (OAA)

"With OAA, the death of one of our affected kids or adults is put out on our list serve, Facebook page, and website. We also have a memorial page on the website with photos of the deceased and a little caption about the person. At our conferences every two years, we have a photo montage to music that is shown at the end to remember all those who have passed away. It helps keep their memories alive and is a beautiful tribute."

Another organization offers related ideas:

:Marie Malloy
:CdLS Foundation

"We try to connect a family who has just lost a child with CdLS to a family who has been through it, if they want. Several families also participate in a closed Facebook group. Recently, we published a book written by our parents, grandparents, and siblings about their personal experiences dealing with death and grief."

A valuable resource on this topic includes [http://partnershipforparents.net/ Partnership for Families]
==Supporting our Members During the Loss of a Loved One==
:Brenda Conger, Director
:CFC Family Network, Inc

"We have had a few deaths in our group, and I usually send out a card from the organization as well as a special book that helped me when my own younger brother died. We find that the families are very appreciative to have an article on their child along with a photo in the next newsletter. The parents have all been involved with writing the tribute on their child. We always include the deceased families in our Parent Directory, and at our very first International Conference two of the families did attend!

The one mom in our organization who has lost her only child to complications from CFC syndrome has worked through her grieving process by selling Silver Pins in honor of all children with disabilities. She has made up a nice business card that goes with the pin and explains how the money will go to assist children born with CFC syndrome. This mom has also volunteered to become editor of our newsletter. The other three families that have had deaths remain in touch, but are not so involved with the organization or Family mailing list.

I had the conference dedicated to those that have passed over to the other side and had a tribute page with their photos in our conference program."

Another organization has a similar approach:

:Jackie Clark

:Share and Care Cockayne Syndrome Network

“In my group, Share and Care Cockayne Syndrome Network, we have a few private groups (one for parents of CS kids only for medical discussions, and one for anyone grieving from the loss of a child with CS) as well as a public "FanPage" on Facebook. When a child passes away, the parents are usually aware that the child has been sick since they typically will post information in the private FB group.

-- We post the sad news with a picture of the child on our FanPage, and then families usually share it on their pages.

-- We add the newly bereaved parents to the "Good Grief Page"

-- Record a balloon release in memory of the child or several children who recently passed away, and we put it on YouTube in addition to sharing it on the FanPage.

-- Post happy birthday messages of all of the kids, even the ones who've passed away (and we include how old they would have been)

-- Post messages to remember them on their "angelversaries".

We also try to post a picture of a CS child daily on our FanPage to celebrate a CS child or children; they can be living with CS or passed away.

I found the Compassionate Friends meetings in my area to be very helpful; thus, I try to ask them to send a rep out to conferences, and/or ask for someone from Children's Hospital to facilitate a memorial for our group, which includes a live butterfly release. Last year we had a t-shirt made with a butterfly design using all of the names of kids who had passed away from CS.”

==Internal Links==
*[[Autopsies and Tissue Collection]]
*[[Best Practices]]
*[[Conferences, Workshops, and Meetings for Affected Individuals]]
*[[Connecting Individuals]]
*[[Internet Services]]
**[[Internet Services: Mailing Lists|Mailing Lists]]
**[[Internet Services: Websites, Chat Rooms, and Newsgroups|Websites, Chat Rooms, and Newsgroups]]
*[[Phone Services: Going Beyond the Phone Tree|Phone Services]]
*[[Protecting Member Privacy]]
*[[Setting Up A National Conference]]
*[[Support for Individuals and Families]]
*[[Youth to Adult Transition Issues]]

Best Practices

2018-06-22T17:42:05Z

Aguise: /* Down Syndrome */

Below is a list of resources for best practices. Each of these genetic disorders have best practices associated with them, however it is often hard to find all of the reliable resources.

==Achondroplasia==
* [http://www.mayoclinic.com/print/dwarfism/DS01012/DSECTION=all&METHOD=print Mayo Clinic: Dwarfism]
* [http://www.lpaonline.org/mc/page.do?sitePageId=84634&orgId=lpa Little People of America: Frequently Asked Lifestyle Questions]
* [http://web.memberclicks.com/mc/page.do?sitePageId=73534&orgId=lpamrs Little People of America: Development]

==Down Syndrome==
* [http://www.ndss.org/Down-Syndrome/Down-Syndrome-Facts/ National Down Syndrome Society: Fact Sheet]
* [http://www.ndss.org/Resources/Therapies-Development/Early-Intervention/ National Down Syndrome Society: Best Practices for Early Intervention]
* [https://www.ndss.org/resources/employment-and-volunteer-work/ National Down Syndrome Society: Best Practices for Employment and Volunteer Work]
* [https://www.ndss.org/resources/transition-family/ National Down Syndrome Society: Best Practices for Transition and Adulthood]
* [http://www.ndss.org/Resources/Therapies-Development/ National Down Syndrome Society: Best Practices for Therapies and Development]
* [https://www.ndss.org/Resources/Health-Care/Health-Care-Guidelines/ National Association for Down Syndrome: Healthcare Guidelines]
* [http://www.nads.org/resources/facts-about-down-syndrome/ National Association for Down Syndrome: Fact Sheet]

==Spina Bifida==
* [http://spinabifidaassociation.org/project/urologic-care-and-management/ Spinda Bifida Association: Urologic Care and Management]
* [http://spinabifidaassociation.org/project/natural-rubber-latex-allergy/ Spinda Bifida Association: Latex Allergy]
* [http://spinabifidaassociation.org/info-sheets/ Spinda Bifida Association: Info Sheets]

==External Sources==
[[Wikipedia:Genetics|Wikipedia]] article on this topic.

==Internal Links==
*[[Autopsies and Tissue Collection]]
*[[Conferences, Workshops, and Meetings for Affected Individuals]]
*[[Connecting Individuals]]
*[[Dealing with Death]]
*[[Internet Services]]
**[[Internet Services: Mailing Lists|Mailing Lists]]
**[[Internet Services: Websites, Chat Rooms, and Newsgroups|Websites, Chat Rooms, and Newsgroups]]
*[[Phone Services: Going Beyond the Phone Tree|Phone Services]]
*[[Protecting Member Privacy]]
*[[Setting Up A National Conference]]
*[[Support for Individuals and Families]]
*[[Youth to Adult Transition Issues]]

Best Practices

2018-06-22T15:58:56Z

Aguise: /* Spina Bifida */

Below is a list of resources for best practices. Each of these genetic disorders have best practices associated with them, however it is often hard to find all of the reliable resources.

==Achondroplasia==
* [http://www.mayoclinic.com/print/dwarfism/DS01012/DSECTION=all&METHOD=print Mayo Clinic: Dwarfism]
* [http://www.lpaonline.org/mc/page.do?sitePageId=84634&orgId=lpa Little People of America: Frequently Asked Lifestyle Questions]
* [http://web.memberclicks.com/mc/page.do?sitePageId=73534&orgId=lpamrs Little People of America: Development]

==Down Syndrome==
* [http://www.ndss.org/Down-Syndrome/Down-Syndrome-Facts/ National Down Syndrome Society: Fact Sheet]
* [http://www.ndss.org/Resources/Therapies-Development/Early-Intervention/ National Down Syndrome Society: Best Practices for Early Intervention]
* [http://www.ndss.org/Resources/Education/Implementing-Inclusion/ National Down Syndrome Society: Best Practices for Elementary and Secondary Intervention]
* [https://www.ndss.org/Resources/Transition-and-Beyond/Thinking-About-Tomorrow/ National Down Syndrome Society: Best Practices for Transition and Adulthood]
* [http://www.ndss.org/Resources/Therapies-Development/ National Down Syndrome Society: Best Practices for Therapies and Development]
* [https://www.ndss.org/Resources/Health-Care/Health-Care-Guidelines/ National Association for Down Syndrome: Healthcare Guidelines]
* [http://www.nads.org/pages_new/facts.html National Association for Down Syndrome: Fact Sheet]

==Spina Bifida==
* [http://spinabifidaassociation.org/project/urologic-care-and-management/ Spinda Bifida Association: Urologic Care and Management]
* [http://spinabifidaassociation.org/project/natural-rubber-latex-allergy/ Spinda Bifida Association: Latex Allergy]
* [http://spinabifidaassociation.org/info-sheets/ Spinda Bifida Association: Info Sheets]

==External Sources==
[[Wikipedia:Genetics|Wikipedia]] article on this topic.

==Internal Links==
*[[Autopsies and Tissue Collection]]
*[[Conferences, Workshops, and Meetings for Affected Individuals]]
*[[Connecting Individuals]]
*[[Dealing with Death]]
*[[Internet Services]]
**[[Internet Services: Mailing Lists|Mailing Lists]]
**[[Internet Services: Websites, Chat Rooms, and Newsgroups|Websites, Chat Rooms, and Newsgroups]]
*[[Phone Services: Going Beyond the Phone Tree|Phone Services]]
*[[Protecting Member Privacy]]
*[[Setting Up A National Conference]]
*[[Support for Individuals and Families]]
*[[Youth to Adult Transition Issues]]

Taking Credit Cards on the Web

2018-06-22T15:39:15Z

Aguise:

You have several options for taking credit cards on the Web. They fall into two categories: using a service that collects the money and passes it back to you, or setting up your own virtual terminal. Your organization should consider several things as you select a method for taking donations, such as technical requirements and how much you expect to receive in donations.

'''Services that Collect Money on your Behalf'''

Services such as [http://www.paypal.com/ PayPal], [https://wallet.google.com/seller/integrate_email.html Google Checkout], or [http://www.networkforgood.org/ Network for Good] take credit cards over the Web and transfer funds to others. They have online merchant services in place and, after a modest setup fee (and sometimes a monthly fee), charge a small percentage or transaction fee to take payments on your behalf. The big advantage to these systems is simplicity and startup costs. These systems can be added to your Web site within one day for startup costs as low as an hour or two of Web work.

Google Checkout is offering commission [https://checkout.google.com/seller/npo/index.html free transactions] through 2008 to 501(c)(3) organizations. At the end of 2007, Google launched a very user friendly Donate program. They also have a very simple "Buy Now" that has very small fees and doesn't require the use of expensive shopping cart software.

Organizations that use PayPal report that it is easy to use for them as well as their donors. Preferences can be set so that your organization is notified of the donor's name and address when a donation is made. Or if you prefer, you can log into PayPal and print a running history of all transactions made through the service. Another advantage of PayPal is that it accepts international credit cards. Their accounts actually hold your funds until you transfer or spend it - but they do pay decent interest on held funds.

Groundspring and Network for Good are organized specifically to provide online tools and services for nonprofits. When you create an account with them, they provide simple html that you can easily place on your own website with no programming experience. They can be a bit more costly, however.

All of these services are"3rd party" processors. You never see or have access to the customer's credit card or checking account information. This is a great security/privacy benefit to your donors and reduces the burden you have of securing such information.

'''Setting up your own Terminal'''

Taking cards on the Web directly involves more development at your website. Some web development companies, such as https://www.webtrix.com/, can help develop the terminal and ways of visualizing transactions online. The first step is to open a merchant account, which you can do at the same place your organization banks. You should also feel free to shop around; other banks may offer significantly better terms for this service, even if you are happy with your organization's existing accounts.

Once you have a merchant account, you need "secure server" access (a service provided by most ISPs, typically with a monthly charge) and shopping cart software to actually complete the transactions, including verifying the credit cards. Most shopping cart software comes with customizable templates, but these will require adjustment, so don't forget to build in costs or time for webpage production as you embark on this project. Depending on your ISP's range of services and your merchant account's security requirements, you may also be required to buy a commercial "trust" certificate.

Like organizations such as Groundspring, merchant accounts will also involve transactions fees of some kind, although they may mean that a larger net income from donations goes to your organization. The total setup, however, can easily cost over $1000 and up, even if your ISP includes a shopping cart software license in your monthly fee. Setting them up also requires a careful Web maintainer, even if programming is not required.

'''Other Tips'''

Whatever system you use, make it simple for your donors. While any donor can easily understand how to put a check in an envelope, people are becoming increasingly comfortable with online payments and with good reason: many sites make them simple and secure. It is important that you make it as easy as possible for those visiting your site to make a donation to your organization at the moment that they are feeling appreciative for your services, especially if you include donation appeals in electronic (email or Web) newsletters.

Most advocacy organizations report large increases in the numbers of members that join after they establish a Web presence. Many report spikes after Christmas and Hanukkah, since end of the year giving usually increases, and computers and Internet access are popular gifts.

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Building a Website]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[People and Roles]]
*[[Recruiting]]
**[[Publicity and General Media]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Social Networking]]

People and Roles

2018-06-22T15:30:13Z

Aguise: /* Resources */

An organization is made up of people, and those people take different roles. For those of you who have been running an organization for a while, especially if you've been doing it on your own, you know that one person can wear many different hats. Knowing what those hats are can sharpen your vision your sense of what is possible for members and yourself. Let's take a look at some of the roles that advocacy organizations play and some of the pools you'll draw from.

==Governing boards==
Boards are groups of people that meet periodically to review information about an organization and make recommendations. A board can be a very formal group, complying with requirements and codes to support an organization's nonprofit status, and you need to keep in mind some of those requirements as your organization grows. Although it may be tempting to say "we're just a few parents trying to stay abreast of our kids' conditions," knowing a bit about how a governance board is constituted and run can save you time and simplify your operations as an organization especially if a conflict arises.

==Advisors==
A governing board advises your organization, of course, but your organization may use other advisors as well, and even collect them into separate boards. The advisors we'll focus on will generally be scientific/medical advisors, or professional advisors. Organizing your approach to bringing in this kind of professional assistance will both make your use of those resources more efficient and signal to the professionals you approach that your organization is a going concern.

==Staff==
Staff is a big bucket and includes all kind of roles for an organization, from answering phones to stuffing envelopes to developing educational materials to raising money. Staff may be paid or volunteer. We are focusing on roles here, and you don't have to take money to be a bookkeeper or a fundraising director or a volunteer coordinator.

You may be tempted to think solely in terms of membership plus a few professional advisors and maybe a bookkeeper, but you can draw from many different pools. You can think of your member pool creatively, too, as a way to think about reasonable efforts from those who do work for your organization.

==Consultants==
Your organization may have occasional or small-scale needs for paid work the design and production work for a brochure, periodic money management or tax preparation, or event planning. These are opportunities to use freelance help, which may be available on a volunteer basis, for some kind of trade, or paid.

==Volunteers==
The initial efforts for an advocacy organization are contributed by volunteers, and many organizations are entirely volunteer or nearly so throughout their lives. One advantage of volunteers is that they're free! Unfortunately, people often feel free to drop out of work for which they are not paid. Even when no money changes hands, the connection, recognition, and support that is required to recruit and retain good volunteers is important to appreciate both to keep your volunteers happy and to do a good job of ensuring that volunteer coordination doesn't turn into an onerous chore.

==Interns and Students==
You may need short-term help to prepare for an event, to staff it, or to complete a big mailing. Depending on the work and the time frame, interns and students (from middle school on up) can be a great way to get work done. Students with assignments such as interviews in the work world or volunteer requirements, whether for school or for extracurricular activities, may be just the helping hands you need to get out a big annual mailing or to help keep an event running smoothly by staffing a table or helping to direct traffic. Interns are a good choice when a fairly straightforward project with a defined time period needs someone to focus on it, someone can do so with minimal direction.

You might luck out and find an intern with desktop publishing skills to design a holiday greeting, or a nutrition graduate student who can help develop a cooking activity for a group of kids with a metabolic disorder. However, interns and students are more likely to be looking for some training as well as some experience. Advantages of students and interns include the cost, but remember that they usually have a motivation beyond your group in particular, so be aware of the context of their participation, whether that means helping them verify their assistance or taking time to teach them tasks or be available for assignments they are completing.

==Retirees==
Members, who may be working or deeply involved in childcare, and students, who have classes to attend and studies to complete, may not have the right blocks of time available. Retirees can be a wonderful resource to your organization, and they may bring a tremendous variety and depth of experience. Some groups, such as [http://www.score.org/ SCORE], have programs that match people with business experience in specific areas with people who need mentorship in those areas. All the same notes about working with any volunteer apply be clear about the kind of support you need and the way your organization wishes to accomplish the goals involved, and respectful of the volunteer's contribution, even if you need to channel their energy.

==Resources==
[https://www.iapo.org.uk/working-partners-and-stakeholders-toolkit Working with Partners and Stakeholders Toolkit], from the International Alliance of Patients' Organizations, provides guidance and recommendations on how patient organizations can develop effective, long-term partnerships with a range of stakeholders, including other advocacy groups, government, industry, and health care providers. Additionally, it includes materials to assist organizations in developing their infrastructure and capabilities. Toolkit covers awareness-raising, advocacy, strategic planning, fundraising and effective communication.

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Building a Website]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[Recruiting]]
**[[Publicity and General Media]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Social Networking]]
*[[Taking Credit Cards on the Web]]

Getting Grants

2018-06-22T15:12:41Z

Aguise: /* Grant Logistics */

Grants are available from many sources, although most granting agencies, from the government to small family foundations, have some guidelines they follow. You will need to do some sleuthing to find out where you might qualify for funds and how to submit a proposal for those funds. Sometimes this is as simple as a letter, and more often it is a fairly robust written proposal and considerable supporting documentation.

The two major sources for grant funding are private sources, such as corporations and foundations, and government sources. Each has pros and cons, and your organization should probably explore both, partly because they tend to support different types of needs.

==Foundation Grants==

The private sector makes monies available to organizations for several reasons. Private organizations may have a tax advantage or a charter requirement in doing so. Corporations may wish to counteract the effect of some negative attention they have received, or may simply be good corporate citizens interested in supporting community involvement.

There are several advantages to seeking monies from the private sector:

*The applications are typically short.
*The funding cycles are typically fast.
*The private sector often privileges simple criteria, such as geographical location. They often choose to fund projects in locations where they have a business interest or a large employee base.
*A private organization may well grant funds because of a personal connection, such as a board member or employee having an affected family member.
*Private-sector sources are a good source of funding for infrastructure, such as copiers or other equipment.
*While the amounts may be small, private-sector sources can be a great way to fund pilot projects to gather information or establish questions information you can then use for a larger grant application to another source.

The private sector isn't an all-purpose answer, though. The amounts available are usually smaller, for one thing. Also, factors like geography can work against you if you're in an area that is home to lots of nonprofits seeking funding, or a remote area. Corporations may only fund organizations whose agenda closely matches their own, and their definitions may be arbitrary.

The stock market isn't helping, either; many funding sources rely on market portfolios to generate income, and as the market has contracted, so have their grants. This has created a tremendous crisis for arts organizations. The silver lining for genetic advocacy organizations is that organizations representing health and science issues are more likely to receive funding.

Finding these organizations: You may already know of corporations or foundations you can approach, and you can generate a list using the Yellow Pages. There are several resources for identifying funders, too:

*[http://fdncenter.org/ '''The Foundation Center'''] - The Foundation Center offers a weekly email bulletin and courses. If you only have time to pursue one resource, this is a good one.
*[http://www.cos.com/ '''Community of Science'''] - Community of Science also offers a weekly email update, and its results may overlap with those of the Foundation Center.
*'''Sponsored Project Information Center (SPIN)'''. Available through public libraries, this resource usually requires a librarian to run a search for you, but it searches several databases of funding opportunities.
*'''Your local public library.''' Librarians are specialists in questions just like this (and this is a common one, so the answer is at the tip of their fingers). They can point you to indexes and run searches, like the SPIN search, for you.
*'''The World Wide Web.''' Web searches through engines such as [http://www.google.com Google] can offer more information than you can sift through, but if your queries or terms are very specific, or if you are getting a sense of the landscape, they certainly offer access to a wealth of information.
*'''You can also hire someone else to find, and write, grants for you.''' We'll talk more about this later.

Communicating with them: Private-sector sources can be accessed relatively informally, although as with any funding source, you should research their process and follow their directions. Your approach will depend primarily on what they tell you about how to tell them your story and whether you have personal contacts in the organization. You may simply have an employee forward a letter of intent to an internal office, or you may fill out a formal application.

Whatever the approach, the information you give them will not vary. You need to tell them:

*The goals of your project
*Why it is important
*How the research is relevant to them, their employees or community, or their mission
*How the research will benefit them
*Estimated costs (a single number, not a detailed budget)
*Any special advantages your organization or project has, such as location

This could take the form of a two-page business letter, and will usually receive some kind of reply (from "Not our issue" to "Here, fill out our application") in two to four weeks.

An application for private-sector funding is typically longer, and may include a couple of pages of the statement of need, a couple of pages of project description, a budget page, and a page describing your organization bookended by a one-page summary and a brief conclusion. Applications can sometimes benefit from an appendix, which may highlight the qualifications of project staff or show the results from a previous or related effort. They are usually acted on by the funding organization in about six to eight weeks.

As prepare your story for a potential sponsor, remember:

This audience is not expert in your area. Tell your story in a compelling, accessible way.

Some kind of personal contact can be a tremendous advantage, so consider attending events by local organizations that offer funding or that are funded by a source you'd like to get to know better. Introduce yourself; start a connection.

It's OK to send your proposal to several potential sources simultaneously. Especially in an environment where fewer dollars are available, this could enable you to efficiently pull together complete funding from several sources, rather than feel strapped by inadequate funding from one source.

More URLs:

Larissa Golden Brown, a grantwriter, discusses grantwriting at her [http://grantseeking.net/ website].

Elizabether Brunner, another grantwriter, offers tips at her [http://www.grantproposal.com/ site].

Howard Hughes Medical Institute and the American Association for the Advancement of Science maintain a [http://www.Grantsnet.org/ site] that specializes in training grants for individuals in degree or postdoctoral programs, but it has some good general information as well.

==Government Grants==

The skills involved in winning government grants have the same foundation as those for foundation grants, but there are different protocolsand a few idiosyncratic requirements. This is a large subject and can have strong connections to research activities and advocacy efforts. We'll add more about this later. In the meantime, we invite you to share your organizations experiences with obtaining grants from government agencies info@geneticalliance.org.

==Should I Hire a Grant Writer?==

There are two answers to this question: Yes and No. Which answer fits your organization depends on your size, your funding requirements, your funding resources, and the funding environment. We'll add more about this later. In the meantime, we invite you to share your organization's experiences with grant writers info@geneticalliance.org.

I found this to be an interesting article to take away the fear of grant writing.
[http://grantseeking.net/ Demystifying Grant Seeking]

==ScanGrants==

ScanGrants [http://www.scangrants.com/]is a free online listing of grants, scholarships and other funding opportunities in the health sciences. We are a project of the Center for Health Research and Quality of Samaritan Health Services, a nonprofit network of Oregon hospitals, physicians and senior care facilities.

Our aim is to enable medical researchers, those involved in public and community health and those seeking to locate scholarships in the health sciences to efficiently find potential sources of funding so that they can work hard on science and health matters and not have to devote unproductive amounts of time searching for funding. ScanGrants has been adopted by various medical, public and academic libraries and offices of research administration in university settings. We strive to serve those who do not have access to expensive, for-profit databases of funding opportunities.

A bit of background. I am the Web administrator of ScanGrants and work very hard to apprise those in the library, research and clinical research fields of its existence so that a larger number of potential applicants can learn of opportunities for funding. The immediate goals are to generate interest in clinical research among novice researchers, to enable funders to be able to pick from a wider pool of applicants and to apprise experienced researchers and health science students of grants, fellowships and scholarships that they might never have heard of but for ScanGrants. The ultimate goal is to advance science by connecting researchers and funders more efficiently than has heretofore been the case. This is a win-win for everyone. We attempt to list funding opportunities that are often listed in few other online databases.

To that end, we welcome news of any grants or scholarships in the health sciences. If you are a disease advocacy organization, professional/scholarly society or foundation and wish to spread the news of grants to as wide a pool of potential applicants as possible, please feel me free to email with news of such opportunities for listing on ScanGrants.

Thank you for your trouble.

Hope Leman
Grants Coordinator
Center for Health Research
and Quality
Samaritan Health Services
815 NW 9th Street Suite 203A
Corvallis OR 97330
Telephone (541) 768-5712
hleman@samhealth.org
www.scangrants.com

==Grant Logistics==
After receiving a grant from a corporation, it is possible that they may ask for an invoice along with other forms such as a W-9. There are many templates for invoices that could be of use to your organization. For example, Microsoft Office has a number of free templates for creating invoices. See the following Links:
[https://templates.office.com/en-us/Invoices]
[http://office.microsoft.com/en-001/templates/results.aspx?qu=Sales+invoice+%28Green+Gradient+design%29&ex=1&avg=zwd]
[http://www.skilledup.com/learn/basic-computing/100-best-microsoft-word-templates/]
Another option to consider is generating the invoice from your accounting software, such as, QuickBooks, or a similar software.

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Building a Website]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[People and Roles]]
*[[Recruiting]]
**[[Publicity and General Media]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Social Networking]]
*[[Taking Credit Cards on the Web]]

Donations

2018-06-22T14:42:06Z

Aguise: /* Donation Software and Databases */

Look at donations broadly. You can obtain money, equipment and supplies in this category. A donations campaign—or even an ad-hoc effort—can be combined with seeking foundation grants, as discussed above, to offer companies a range of options for being involved with your organization.

==Obtaining Donations==
:Mary Ann Wilson, Administrative Director
:Neurofibromatosis, Inc.

"In 1979, the Neurofibromatosis Mid-Atlantic Chapter started in my dining room in Mitchellville, Maryland. We mailed letters, seeking to identify families, to the local pediatricians listed in the Yellow Pages of the telephone directory. The Chapter needed an inexpensive way to reproduce information about the disorder and communicate with the families and health professionals about various resources and meetings we were scheduling.

The Washington Post published a feature article on the Mars family (that's right—the candy people) in McLean, Virginia just across the Potomac River. I wrote a letter to The Mars Foundation explaining the disorder, the support group just getting started, and the need for a copying machine to help make information available to families and physicians.

Knowing that a lot of different people make a high volume of copies in libraries, I visited the local library to find out the manufacturer of the copiers being purchased by the County Library System. The local representative for the manufacturer quoted us a good price for a tabletop copier after hearing our story.

In less than a month after writing the letter to The Mars Foundation, we received a check for $2,000 for the copier. Until we moved into bona fide office space 10 years later, we used only that machine. We then obtained a donated copy machine with a much larger capacity. That is another story!"

Accepting donations via an online platform is something that a lot of organizations are currently (or considering being) engaged in. While some have had success with PayPal, other organizations have found it more beneficial to use other platforms such as Stripe or Blackbaud.

The following is one organization's view on this:

"We use PayPal and have never heard of anyone complaining about spam or unwanted emails from them. I have had donors say they will not use sites where they do not know or trust the company handling the credit card payments, but that they will use PayPal because they believe it has a good reputation for safety and it is very well known. For donations where the donors put their credit card information on a donation envelope and send it to us to enter, we use Square, as there is no monthly fee like PayPal has for this service and they charge the same as PayPal for American Express, which many of our donors seem to use. Visa and Master Card fee is a little higher than PayPal but the difference doesn’t add up to the monthly fee, so it is still less expensive.

We have a donor database system and could have used their credit card service and information would have gone directly into our database, but there were much higher fees and they didn’t accept foreign credit cards, so we stayed with PayPal. And the daily deposits which they thought were a plus would have just made quite a bit more paperwork for us, so I prefer having control on when we receive our money from PayPal. We can do a custom import into our donor database but we have found it is often just as fast to enter it manually, as there are some items the import doesn’t catch and we have to go into the records anyway.”

==International Donations==

Many organizations are looking for ways to function and get donations internationally. This becomes especially important for rare conditions; the international support is quite necessary with a small population of affected individuals. Arrangements of this nature are a difficult issue, due to differing donation and tax exemption regulations.

The criteria for donations and taxes varies widely among countries. There are individual standards, though there is usually the expectation of a physical presence and offering resources and supports to residents in that country of agreement. Getting status as a charity in the country of operation might also be required. Here are some questions and plans to consider:

*Eleni Z. Tsigas
Executive Director
Preeclampsia Foundation

"...wondering if there might be some value in combining forces to set up an
office in some of our key countries that would serve as a 'registered agent'
co-op, of sorts. It would serve as the physical address and a local bank
account could be set up. We would probably need to contract with a local
bookkeeper (for a few hours a week at most, I might think) that would be
responsible for taking in donations, allocating them to their respective
organizations and then either paying expenses when the money is spent in
country or if its allowed, to forward the money to the parent organization."

*Lindsay B. Groff, MBA
Executive Director
Barth Syndrome Foundation

Typically, donations are made within the country/area where we have an Affiliate, and the money is used there. However, the main organization in the US hosts the International Conference and the grant program. As such, our Affiliates can choose to support these two main programs given that the greater good will benefit no matter the country or region.

*Marie-Claude BOITEUX
CUTIS LAXA INTERNATIONALE

We have been considering this issue for many years and did not find yet the right way to set up chapters in other countries.We are in France and Cutis Laxa Internationale is the only support group for Cutis Laxa worldwide. There are several families in the USA and we thought about setting up a chapter there. The only points we went through with are: each chapter must be registered as non-profit in its country and you cannot deliver a tax receipt to be used in another country

There are many different types of agreements for managing your organization internationally, and it can be successful if rules, incentives, and representation for the international membership are taken into consideration

Please see our article on [[International Offices|international offices]] for more information.

==Donations from Canada==

This thread is organized to answer the following question about donations from an organization in Canada to an organization based in the U.S. posted in 2015:

→'''Inquirer''': ''I am a new member of this group. I run a one-year-old 501c3, Usher 1F Collaborative, http://usher1f.org. We are working to raise funds for research for a cure for Usher Syndrome Type 1F. Usher Syndrome is the leading cause of deaf-blindness, and Type 1F refers to our specific genetic mutation, which runs in those of Ashkenazi Jewish descent.’’

''I have a question that I am hoping someone has dealt with and has a suggestion for us. We have promised to us a $10,000 donation from a Canadian foundation. However, they cannot donate directly to us without jeopardizing their Canadian tax exempt status. We looked into having them donate directly to one of the two U.S. researchers, who are the only ones in the world working on our mutation, but neither of their universities is on the Canadian government approved list, which is dependent upon the number of Canadian students who attend the university. Thus, we are looking for an intermediary who can accept the funds and transfer them either to our foundation or directly to the researchers. We do not care whether the funds go through us or directly to the researchers as long as they get there. Does anyone know of a way to accept Canadian donations? We thought about setting up a parallel foundation in Canada, but we would be in the same boat as we could not donate those funds to a U.S. researcher.’’

→'''Responder 1''' replied:

I wonder if the Canadian Organization for Rare Disorders might be of some help with this situation?
http://www.raredisorders.ca/

→'''Responder 2''' replied:

Generally, CORD, like any foundation has a problem being a passthrough.

Canada is very strict about this – we have had a couple of hundred thousand dollars sitting there for a couple of years.

We could only accept money once we had an affiliation with an approved Canadian University and they were doing actual research – because they would not do a pass-through either.

Responder 1: Wow, what a terrible catch-22! But I wasn't thinking CORD could act as a pass-through, but rather that it - or perhaps one of it's affiliated organizations - might be able to offer some guidance or experience.

Keep looking for people to ask about this, Melissa - and if they don't know/don't have an answer, ask them who else you might contact. If there's one thing rare disease organizations are good at, it's *finding a way, one way or another.*

Good luck, and please keep us posted on what you learn

→'''Responder 3''' replied:

The Canadian donation could be an opportunity to collaborate with a Canadian university lab to pay for a post-doc to do science on your syndrome...

We're doing something similar with (University of) Penn Medicine's Orphan Disease Center. We're fundraising, they're 1:1 matching, and doing the logistics to grant funds to a researcher, for research directed by our RASopathy advocacy network partners. (Anyone interested in donating to the Million Dollar Bike Ride? Here's the link to our page - http://www.milliondollarbikeride.org/team/rasopathies-network/ -- The ride is this Saturday)

→'''Responder 4''' replied:

We have run into similar issues in two ways. We have a Canadian foundation that wants to give us money, but they cannot write a check to us in the US. Thankfully, we have a formal Canadian Affiliate who accepts the donation and uses it for services within Canada.

Our Affiliates support our centralized research grant program. For our Canadian Affiliate, they must first check if the organization is on the list of “qualified donees.” If the organization is not on the list, they cannot fund the research. I asked my contact in Canada about this and she said, “I have looked and spoken with our auditor about this, and unfortunately there are no exemptions or exceptions.”
Inquirer: Do you know if there is a list of qualified donees other than US universities?

→'''Responder 5''' replied:

I am curious, has anyone ever funded a Canadian student or post-doc to travel to the US for training in a US lab?

That wouldn’t help your US researchers fund their staff, but it might help them build capacity in other ways.

→'''Responder 6''' replied:

While I am by no means an expert on this, my foundation (us based) works with a Canadian affiliate to find research. We write a contract for each project explaining are cofunding and the Canadian foundation then wires us the funds to be used towards the execution of the project. We have worked together to find projects in Canada as well as the U.S.

→'''Responder 7''' replied:

Can someone point us to the regulations that drive the “what’s raised in Canada stays in Canada” restriction. I'd like to learn the details .. is it only tax deductible donations, is it a constraint on all funds from a Canadian charity or just certain funds, how do the bylaws and mission of the charity affect their funding ability, what is the definition of a cross-border partner/collaboration, is it just a research restriction or does it cover awareness and education, etc. And if the answer is essentially a blanket “nothing leaves” - then how can we support our Canadian friends to change their policy and regulations - or is there a proverbial third rail here that no one wants to touch (and why)? It’s a new interconnect world where we all must strive to work together no matter the colors on the flag.

I could imagine the Canadian Parliament wanting to keep all of the charity funds in Canada to bolster their economy and research, but it is also a bit short sighted to think that they can’t or shouldn’t aggressively support research in their 10x the size southern neighbor or the rest of the world for that matter.

In the US, we are allowed to fund worthwhile research and other projects in any country as long as it is consistent with our mission. We must be public benefit to gain a US 501c3 tax exempt status, and so we are always mindful that what we do must have some benefit for US families … but for right now, for example, all three of the MLD clinical trials are in Europe and most of the basic science work that needs funding is in Europe. Our support of that work will bring benefit to US families.

→'''Responder 8''' replied:

We have literally JUST undergone the process of supporting the incorporation of what will become an “affiliate” of the Preeclampsia Foundation in Canada so these questions are fresh in our minds. Canada does not completely restrict the use of funds outside of Canada, but does place some fairly reasonable (IMHO) restrictions so that our fundraising efforts in Canada don’t only flow outside the country. They have somewhere in the neighborhood of 500 authorized 3rd party entities (e.g., academic institutions, other non profit organizations) outside of Canada that can accept grants and donations from Canadian organizations. In addition, a Canadian charity can “hire” a non-Canadian vendor to help them accomplish their mission. That could be a US charity providing technical assistance, for instance. They would look unfavorably to ALL the money leaving the country.

The regulations are all out of CRA and are pretty clear on this point. Where I believe they get ridiculous is that they don’t consider the distribution of printed or other multi-media materials on a health issue an adequate education strategy. And forget “awareness” - does not register as a mission area. I.e., they are very old school in terms of how public education happens around a health issue: organize a patient symposium, bring in didactic speakers, etc. I wouldn’t dream of suggesting a social media campaign, for instance!

I like some of the creative approaches suggested by Sharon to expand the leverage of Canadian funds.

In my next life – or when I finally figure out how to replicate hours in a day! - I would love to partner on how to make our efforts far more seamless for globalized research and education. The borders are increasingly irrelevant. I actually had a donor ask me recently if research discoveries made in other countries would be known and/or used here in the US or if countries are proprietary about their findings.

==Donation Software and Databases==
Today there are many methods available to easily store necessary information on donations, like readily accessible software-based databases. One commonly used type of database is a Contact Resource Manager (CRM), which utilizes a database format to easily organize donors in a variety of different ways. While these systems are for the most part straightforward in their approach, a consultant may be helpful to you in efficiently using the software. For the most part, these CRMs also require a fee, generally paid monthly, to be paid to the software company. They are also generally readily accessible online from many locations. Here is a small list of some good options for CRMs, many of which offer free 30-day trials:

*[http://www.convio.com/our-products/common-ground.html Convio Common Ground CRM]
This works as an app on top of the Salesforce Platform mentioned above. This CRM offers a fully customizable system that is easily accessible due to its online nature.

*[http://www.donorperfect.com/ Donor Perfect]
Donor Perfect is a CRM that caters specifically to non-profits. It cites larger-than average increases in fundraising as one of its main benefits.

''Pros'' (thanks to Jean in 2016):
**Flexibility to add fields as needed
**Support/help staff is exceptionally friendly and helpful answering questions (we have unlimited support contract, which I recommend highly, at least in the beginning)
**Development is always working to make improvements and regularly update software based on customer comments on their user forum.

''Cons''

**Primarily geared towards fundraising, not patient/contact management
**Not able to create data reports for analysis of complex information. Reports offer very basic information. (although this is an area that they are working to update)
**Weblink Download forms for use with event registrations can have significant limitations.
**A lot of manual data entry is needed to maintain the accuracy of the information.

*[http://www.towercare.com/nonprofit-fundraising/nonprofit-software-satisfaction Donor Pro]
Donor Pro is another non-profit-specific CRM. Donor Pro offers "householding" which tracks the names, e-mails, and other important information of the people in the household. Offers mail merge capability and/or export functionality so a mail merge can be done through Excel.

:-We are a small start-up and selected Donorpro – cost is $205/month for unlimited users. Best investment we made!

:-We are currently using Donor Pro but had used Sage Fundraising 50 for 13 years before making the change. Both are very good systems, the reason we made the change was that we need to track more extensive “non-donation” information for our Support Services department.

*[http://www.microsoft.com/en-us/dynamics/crm.aspx Microsoft Dynamics CRM]
This is Microsoft's version of CRM software. Microsoft offers personal quotes to potential customers of its CRM. They also offer a wide network of partners to help customize their CRM for your needs.

*[http://www.salesforcefoundation.org/ Sales Force Foundation]
Applying to the Salesforce Foundation can get you access to everything in the Salesforce app network. Many of these apps have special or reduced nonprofit pricing. Nonprofits may be eligible to receive up to 10 licenses as a donation.
Here are some experiences using Salesforce on its own or in conjunction with our programs:
:*I served on a task force to assist a large nonprofit, [http://9healthfair.org 9 Health Fair]- to choose an appropriate database. We evaluated many products, and we eventually settled on SalesForce. However, 9Health Fair is a large organization with an IT specialist and they had budgeted over $100,000 to develop and implement a custom application built on SalesForce. They were shopping among products such as Blackbaud and other top ranked nonprofit databases. They spent well over $10,000 just to hire consultants to help them evaluate database products and assess fit and implementation! I was on the team that selected the consultants. SalesForce is open-source software. An analogy: Compared to a move-in ready house, SalesForce is a lumberyard and a tool box. If you want a house, buy a house. If you want to build a house, the lumberyard is a great place to start, IF you know how to use the tools. SalesForce is a VERY powerful relational database that needs to be tailored to your needs. It’s also useful for VERY simple applications. But if you need a sophisticated application, unless you are somewhat expert at building nonprofit databases, it’s not really a DIY (do it yourself) project.
:*We are using Salesforce Platform and Common Ground (which is changing names to two different products: Convio Luminate CRM and Convio Common Ground d) and have been since 2009. Convio Luminate CRM connects with your Convio Online Marketing (now Luminate Online) systems. Convio Common Ground is a stand-alone product that lives on top of the Salesforce platform and does not connect to Convio Online communications and fundraising systems but has them internally, again driven by what apps give you those functions via Salesforce App Network. All these are technology options that give you capabilities, but all of them require an investment in staff to use them to their full potential – which is VAST. The main advantage over traditional donor databases (DDB) is that:

:::--It is cloud-based so geographically disbursed staffs make easier use of this than a server-side solution

:::--It is customizable to reflect your own organization’s work processes rather than being constrained by DDB’s methods you have to adhere to in using the DDB or develop work-arounds to reflect the way you actually work, what information you want to gather about a constituent besides their donor status and transactions with your org.

:::--It can scale easily as you grow without having to change systems.

:::--It is not expensive for NPOs but very valuable – for commercial companies using Salesforce, these same 10 free seats would be about $15,000/yr.

:::--Everything in the APP world has or is developing APPs that plug in to Salesforce. It is mobile-ready, accessible through all devices, and not going anywhere because of the strength of the company’s commercial client base that subsidizes the NPO users.

:*We use Salesforce - they have a free non-profit version and then as you grow you could potentially pay to get it customized for you. Food for thought. Salesforce does have training and support as well. We aren't in LOVE with it - but it runs Fortune 100 companies so we know it can grow and scale.

:*For anyone using Salesforce - we tried it but I really felt like we needed a consultant, asked two people I work with for recommendations and they both hated their consultants, so I gave up on Salesforce.

:*Some have also used Salesforce to follow up with new members at set time inttervals.

You may also benefit from downloading this CRM review [https://www.blackbaud.com/online-marketing/website-management.aspx article].

==Donations By Text==
This thread is organized to answer the following question about donations by text 2014:

→'''Inquirer:''' ''Can anyone recommend a company that works with smaller charities that want to collect donations via phone text? Everyone that we have found requires a minimum charity income of $500,000.''

→'''Responder 1''' replied:

This isn't exactly what you asked for, but the EveryLife Foundation features a rare disease charity each month and provides a text number for $10 donations to benefit the charity. They also match the first $1000 raised. You can get more information and a link to an application here: http://www.everylifefoundation.org/t2d/

==Online Donation Payments==
This thread is organized to answer the following question about online payments for donations asked in 2014:

→'''Inquirer:''' ''Does anyone have good experience with other on-line credit card processing companies? We're going to have to make a change or stop accepting on-line donations. We're losing too much of the donation to fees, not good for a 501 c 3 who tries to use each penny wisely.''

→'''Responder 1.2''' replied:

We are set up with PayPal and I am not aware of related spam or unwanted email. PayPal offers a discounted rate to non-profits.
https://www.paypal.com/webapps/mpp/donations

We are also set up with Stripe so that we can key in donations, but have never needed to use it yet:
https://stripe.com/

→'''Responder 2''' replied:

We use Blackbaud. Fees are high, but they do a good job.
I’m also interested in hearing if any of you are using text to donate services and what you think. What are fees, etc.?

→'''Responder 3''' replied:

We just recently made the jump to BluePay for our credit card processing; it is set up through our database provider, Bloomerang. Bloomerang is a cloud-based donor management system. We can accept donations online through a “widget” (form) that Bloomerang created which is fully integrated into our database upon payment. This has increased efficiency in entering donations by about 75%. Before, it was a manual process with our bookkeeper; we have used PayPal and Network for Good in the past. We still have those available, too.
I couldn’t be happier with the service at Bloomerang, and I’m glad to talk you through any of this if you are interested. I realize that you only asked about online payments, but since our payment system is integrated into our donor management software, I wanted to share that as well.
This is what it looks like: https://www.barthsyndrome.org/waystohelp/donate/donate.html

→'''Responder 4''' replied:

We have seen an increase in online donations since switching to this online form. We have been told that it is best to keep donors on your site, rather than take them to a third party (like PayPal). There is less drop off since there are fewer clicks. “Donors Prefer Giving on a Nonprofit’s Website: Multiple studies have shown that incorporating donation functionality into your website can help facilitate fundraising success. One online fundraising study found that the average nonprofit with a donation page within their website raised five times more than a nonprofit that sent donors to an external, unbranded donation site.” http://wiredimpact.com/library/get-more-online-donations/

Responder 4’s response to responder 3:
When I attended a class at IUPUI, someone asked about texting to give. The consensus, by far, was to avoid due to heavy administration, large fees, and delayed/contested payments. It might work for very large organizations (Red Cross), but isn’t ideal (as far as I’ve researched) for smaller groups like us.
Responder 5: Ditto on PayPal.
We get zero complaints about PayPal...including no comments about any unwanted marketing from PayPal.
We use it directly and via our online “shopping cart” (part of our website).
On the other hand, when a “nonprofit database” such as Blackbaud or similar has a built-in credit card processor, there are few complaints from “customers” there either. I worked as CFO of a large national organization, and we had our own “merchant services” processing through Key Bank, and none of our constituents batted an eye.

→'''Responder 6''' replied:

We had nothing but problems with pay pal. High fees and security issues. And zero customer support. We now have processing going through Chase. Lower fees, great in-person support and no hassle.

→'''Inquirer''' replied:

Appreciate all the responses, keep them coming!

Two members of my Bd. have had bad experiences with PayPal so have nixed that. We don't have any type of data base since we don't solicit. As a small, all volunteer organization we keep tasks to a minimum if possible.

Looked into moving our credit card processing to Chase (where we bank). Had everything in place then they told us we needed to have a full financial audit, at a hefty cost, and we weren't in a position to do that. End of that discussion.

Your comments will be helpful as we discuss this further.

==Acknowledging Donations==
Writing thank you letters to donors serves three important purposes:

*Thank you letters acknowledge the donor's contribution.
*They help cultivate a relationship between the donor and the organization.
*They substantiate donations for donors who need their contributions documented (usually for tax purposes).

In addition to these thank you letters, some organizations also send out an end-of-the year acknowledgment recognizing donors who contributed over a certain dollar amount. In other cases, such an acknowledgement is only created for donors who give monthly through an electronic transfer.

Over time, organizations can see an increase in the number of donors, which is a great thing! But as you have more donors, you might have to re-evaluate if your process for thanking them is efficient and sustainable. Here’s how some groups determine who will get a more personalized acknowledgment for their donation:
*We only send out the letters for $25 and up unless it is a child's grandparent or someone very involved in our group.
*For $250.00 and over donations, donors receive a tax deductible receipt and a handwritten thank you from the foundation. If the donation is made in honor of a family, the donor receives a thank you and the family that the donation was made for receives notification that a donation was made in their name to the foundation. For anything under $250.. their check, PayPal receipt or credit card statement serves a their tax deductible receipt. Same as above, the donor receives a handwritten note from the foundation etc etc etc… A personal note is always nice. I can see that when a foundation gets bigger and bigger this can be quite a job for one person. There are times the foundation receives donations in huge doses and it can be a big job for our one person who hand writes all of the foundation thank you notes.
*We send a thank you to everyone who donates, regardless of the amount. I’ve noticed that those $10 donors are usually seniors who are really interested in supporting our cause but simply can’t afford to send more. I find that very worthy of a thank you. We do not hand write the acknowledgement – we have a postcard filled out with blanks for the name, date of donation and amount of donation so we simply fill that in manually and mail (in an envelope). We send different ones based on whether they are donating in honor of someone, memory of someone, to our Research Fund or for some other specific cause. We notify the families via e-mail if someone donated in their honor or memory. If it is a larger donation ($1,000 and up) I will type a letter to that donor and be more specific about their donation and what it will accomplish. We used FirstGiving for the first time this year to handle our 5K Run/Walks around the country (online company that handles registration, pledges, etc) and they sent out e-mail thank you messages and tax receipts to all who donated so we did not duplicate those efforts and simply acknowledged the donors in our newsletter.
*[http://www.afpnet.org/ Association of Fundraising Professionals] is the group that I usually turn to ascertain “best practices” on questions like this says that donors deserve acknowledgement of their gift (which I take to be the thank you/receipt) within 48 hours of receipt. We can accomplish that for all online givers (thankfully the majority of our donations) but can’t yet with current staffing levels for our “offline” donors that send checks in the mail. We manage about a week to 10 days from receipt. A personal thank you can follow that time frame. Additionally, we have to respond in this same time frame with the honoree families the donor wishes to know of their gift as a large majority of our donors are giving “In Memory of/In Honor of” donations for a child lost (most often) or living with the disease.

:Our strategy was/still is to invest in CRM systems and online fundraising systems synced with them that allow us to provide that “minimum” as automatically or automated as possible and to minimize the amount of hours required by staff member to accomplish this recurrent task. That being said, we do respond differently based on the level of donor giving that we outline in an internal Donor Recognition Policy/System. At various levels, a matrix of responses is outlined as a mixture of “automated thank you/receipt only,” hand written thank you from staff, same hand written card from Executive Director, same hand written card from Board Member, hand-written card accompanied by “Constituent Thank you letter” telling donor how much their donations help THEM, phone call from staff or Executive Director or Board Member. Top level would be a personal thank you visit of some kind – invitation to event, personal coffee or lunch, etc. The value of these personal responses at higher levels is high because it also gives staff/Me as ED/Board Members a chance to learn more about this significant donor’s interests and capacity so that we know what types of programs/projects/issues are closest to their heart motivating them to give and prepares us for future solicitations by knowing what dollar levels are reasonable to ask for to help invest in what types of initiatives/solutions they want to see. Bottom line – we couldn’t handle the volume we do responding to donors and honoree families without our CRM systems well-developed.
*It is important to send the contact info to people where a donation “in honor” or “in memory” has been made so that they are able to thank the donor.

==Donor Relationship==

One way to build trust and relationship with your donor is to help her understand the process your organization uses to review grant requests. Help her to understand your review process and why you trust those who review grants for you, share their credentials and experiences, and why it's good - even for you - to have some arm's length expert review so we don't let our emotions and enthusiasms for a particular researcher unduly cloud our judgment. Let her know it's not just up to you to make this decision, you have experts helping and guiding you.

And often your grant is not in a vacuum. Her favorite researcher may have other sources of funding so their work with get done with or without your funding, while a second researcher may not be so fortunate. These added perspectives are something you may know but the donor does not - and most researchers are pretty good at not sharing the breadth of their funding to particular donors. Let her know your desire for your ultimate decision is for the best for the whole specific disease community, not just one research project. Be sure to verbalize (but it does not have to be in writing) that the arm's length nature of the donation (other than disease restriction) makes for a better use of funds and is required for tax deductibility per IRS Pub 526.

We often find in our community the families who have had a close contact with a researcher (clinical trial, evaluation, therapy) often "fall in love" with the researcher/clinician, their work and prefer to fund it over other work. We think this is because we want to believe that whatever therapy their loved one had will (and did) work - this is the hope we all need when we have uncertainty and are desperate. This creates a "shared" experience, often reinforced and strengthened by the stress the family was/is under that leads them to trust and want to further invest in that researcher. Although sometimes it's just geographic, something they read, someone's alma mater, a fried/family member's "successful" encounter, etc. I am not sure if any of these are the experience of your donor but perhaps you can get her to resonate with this which might help her to give your space to work your process while not cutting her out of the confidence and trust you want to build with her.

We also tell families, donors, industry, and researchers that we like to "bet on all the ponies" and we hope they all win. Then we have more learning, more choices, more sharing/collaborating, and perhaps in the future more effective combined therapies, etc.

From a pure practical perspective, I might suggest that even if you explain all of this to your donor and she agrees, it might be prudent to very quickly create her acknowledgement letter (which hopefully is pretty much of a template anyhow), personalize it to acknowledge the size of the gift, and spell out that the donor received nothing back (boiler plate), and then add a sentence that the donation will be combined with other funds focused on disease ABC (her request). Then generically state that projects are funded based on the expert grant review committee's recommendation. Also say you will keep her updated on the progress of all of the organization's research (not just one project - don't connect the dots to make the project "hers"). If she balks when she receives the letter and asks for more control you will know quickly and then can decide if you are better off to just give her gift back or if can continue to educate her to give you the space you need.

No amount of money (IMHO) is worth alienating a single donor who can communicate her frustration with your other donors and supporters. Do not get attached to the money ... if she walks from you, you still want her to donate to the specific disease research. If this donor is so hard set on funding a particular project, she will surely find a charity that is more concerned about the size of the numbers on their form 990 than their integrity and IRS compliance (or she will form her own 501(c)(3). In the grand scheme of things the funds still end up in your disease community so that is a good thing, even if the project is not your review committee's first choice for funding or it's not the most efficient project.

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Building a Website]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Events]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[People and Roles]]
*[[Recruiting]]
**[[Publicity and General Media]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Social Networking]]
*[[Taking Credit Cards on the Web]]

Donations

2018-06-22T14:30:37Z

Aguise: /* Online Donation Payments */

Look at donations broadly. You can obtain money, equipment and supplies in this category. A donations campaign—or even an ad-hoc effort—can be combined with seeking foundation grants, as discussed above, to offer companies a range of options for being involved with your organization.

==Obtaining Donations==
:Mary Ann Wilson, Administrative Director
:Neurofibromatosis, Inc.

"In 1979, the Neurofibromatosis Mid-Atlantic Chapter started in my dining room in Mitchellville, Maryland. We mailed letters, seeking to identify families, to the local pediatricians listed in the Yellow Pages of the telephone directory. The Chapter needed an inexpensive way to reproduce information about the disorder and communicate with the families and health professionals about various resources and meetings we were scheduling.

The Washington Post published a feature article on the Mars family (that's right—the candy people) in McLean, Virginia just across the Potomac River. I wrote a letter to The Mars Foundation explaining the disorder, the support group just getting started, and the need for a copying machine to help make information available to families and physicians.

Knowing that a lot of different people make a high volume of copies in libraries, I visited the local library to find out the manufacturer of the copiers being purchased by the County Library System. The local representative for the manufacturer quoted us a good price for a tabletop copier after hearing our story.

In less than a month after writing the letter to The Mars Foundation, we received a check for $2,000 for the copier. Until we moved into bona fide office space 10 years later, we used only that machine. We then obtained a donated copy machine with a much larger capacity. That is another story!"

Accepting donations via an online platform is something that a lot of organizations are currently (or considering being) engaged in. While some have had success with PayPal, other organizations have found it more beneficial to use other platforms such as Stripe or Blackbaud.

The following is one organization's view on this:

"We use PayPal and have never heard of anyone complaining about spam or unwanted emails from them. I have had donors say they will not use sites where they do not know or trust the company handling the credit card payments, but that they will use PayPal because they believe it has a good reputation for safety and it is very well known. For donations where the donors put their credit card information on a donation envelope and send it to us to enter, we use Square, as there is no monthly fee like PayPal has for this service and they charge the same as PayPal for American Express, which many of our donors seem to use. Visa and Master Card fee is a little higher than PayPal but the difference doesn’t add up to the monthly fee, so it is still less expensive.

We have a donor database system and could have used their credit card service and information would have gone directly into our database, but there were much higher fees and they didn’t accept foreign credit cards, so we stayed with PayPal. And the daily deposits which they thought were a plus would have just made quite a bit more paperwork for us, so I prefer having control on when we receive our money from PayPal. We can do a custom import into our donor database but we have found it is often just as fast to enter it manually, as there are some items the import doesn’t catch and we have to go into the records anyway.”

==International Donations==

Many organizations are looking for ways to function and get donations internationally. This becomes especially important for rare conditions; the international support is quite necessary with a small population of affected individuals. Arrangements of this nature are a difficult issue, due to differing donation and tax exemption regulations.

The criteria for donations and taxes varies widely among countries. There are individual standards, though there is usually the expectation of a physical presence and offering resources and supports to residents in that country of agreement. Getting status as a charity in the country of operation might also be required. Here are some questions and plans to consider:

*Eleni Z. Tsigas
Executive Director
Preeclampsia Foundation

"...wondering if there might be some value in combining forces to set up an
office in some of our key countries that would serve as a 'registered agent'
co-op, of sorts. It would serve as the physical address and a local bank
account could be set up. We would probably need to contract with a local
bookkeeper (for a few hours a week at most, I might think) that would be
responsible for taking in donations, allocating them to their respective
organizations and then either paying expenses when the money is spent in
country or if its allowed, to forward the money to the parent organization."

*Lindsay B. Groff, MBA
Executive Director
Barth Syndrome Foundation

Typically, donations are made within the country/area where we have an Affiliate, and the money is used there. However, the main organization in the US hosts the International Conference and the grant program. As such, our Affiliates can choose to support these two main programs given that the greater good will benefit no matter the country or region.

*Marie-Claude BOITEUX
CUTIS LAXA INTERNATIONALE

We have been considering this issue for many years and did not find yet the right way to set up chapters in other countries.We are in France and Cutis Laxa Internationale is the only support group for Cutis Laxa worldwide. There are several families in the USA and we thought about setting up a chapter there. The only points we went through with are: each chapter must be registered as non-profit in its country and you cannot deliver a tax receipt to be used in another country

There are many different types of agreements for managing your organization internationally, and it can be successful if rules, incentives, and representation for the international membership are taken into consideration

Please see our article on [[International Offices|international offices]] for more information.

==Donations from Canada==

This thread is organized to answer the following question about donations from an organization in Canada to an organization based in the U.S. posted in 2015:

→'''Inquirer''': ''I am a new member of this group. I run a one-year-old 501c3, Usher 1F Collaborative, http://usher1f.org. We are working to raise funds for research for a cure for Usher Syndrome Type 1F. Usher Syndrome is the leading cause of deaf-blindness, and Type 1F refers to our specific genetic mutation, which runs in those of Ashkenazi Jewish descent.’’

''I have a question that I am hoping someone has dealt with and has a suggestion for us. We have promised to us a $10,000 donation from a Canadian foundation. However, they cannot donate directly to us without jeopardizing their Canadian tax exempt status. We looked into having them donate directly to one of the two U.S. researchers, who are the only ones in the world working on our mutation, but neither of their universities is on the Canadian government approved list, which is dependent upon the number of Canadian students who attend the university. Thus, we are looking for an intermediary who can accept the funds and transfer them either to our foundation or directly to the researchers. We do not care whether the funds go through us or directly to the researchers as long as they get there. Does anyone know of a way to accept Canadian donations? We thought about setting up a parallel foundation in Canada, but we would be in the same boat as we could not donate those funds to a U.S. researcher.’’

→'''Responder 1''' replied:

I wonder if the Canadian Organization for Rare Disorders might be of some help with this situation?
http://www.raredisorders.ca/

→'''Responder 2''' replied:

Generally, CORD, like any foundation has a problem being a passthrough.

Canada is very strict about this – we have had a couple of hundred thousand dollars sitting there for a couple of years.

We could only accept money once we had an affiliation with an approved Canadian University and they were doing actual research – because they would not do a pass-through either.

Responder 1: Wow, what a terrible catch-22! But I wasn't thinking CORD could act as a pass-through, but rather that it - or perhaps one of it's affiliated organizations - might be able to offer some guidance or experience.

Keep looking for people to ask about this, Melissa - and if they don't know/don't have an answer, ask them who else you might contact. If there's one thing rare disease organizations are good at, it's *finding a way, one way or another.*

Good luck, and please keep us posted on what you learn

→'''Responder 3''' replied:

The Canadian donation could be an opportunity to collaborate with a Canadian university lab to pay for a post-doc to do science on your syndrome...

We're doing something similar with (University of) Penn Medicine's Orphan Disease Center. We're fundraising, they're 1:1 matching, and doing the logistics to grant funds to a researcher, for research directed by our RASopathy advocacy network partners. (Anyone interested in donating to the Million Dollar Bike Ride? Here's the link to our page - http://www.milliondollarbikeride.org/team/rasopathies-network/ -- The ride is this Saturday)

→'''Responder 4''' replied:

We have run into similar issues in two ways. We have a Canadian foundation that wants to give us money, but they cannot write a check to us in the US. Thankfully, we have a formal Canadian Affiliate who accepts the donation and uses it for services within Canada.

Our Affiliates support our centralized research grant program. For our Canadian Affiliate, they must first check if the organization is on the list of “qualified donees.” If the organization is not on the list, they cannot fund the research. I asked my contact in Canada about this and she said, “I have looked and spoken with our auditor about this, and unfortunately there are no exemptions or exceptions.”
Inquirer: Do you know if there is a list of qualified donees other than US universities?

→'''Responder 5''' replied:

I am curious, has anyone ever funded a Canadian student or post-doc to travel to the US for training in a US lab?

That wouldn’t help your US researchers fund their staff, but it might help them build capacity in other ways.

→'''Responder 6''' replied:

While I am by no means an expert on this, my foundation (us based) works with a Canadian affiliate to find research. We write a contract for each project explaining are cofunding and the Canadian foundation then wires us the funds to be used towards the execution of the project. We have worked together to find projects in Canada as well as the U.S.

→'''Responder 7''' replied:

Can someone point us to the regulations that drive the “what’s raised in Canada stays in Canada” restriction. I'd like to learn the details .. is it only tax deductible donations, is it a constraint on all funds from a Canadian charity or just certain funds, how do the bylaws and mission of the charity affect their funding ability, what is the definition of a cross-border partner/collaboration, is it just a research restriction or does it cover awareness and education, etc. And if the answer is essentially a blanket “nothing leaves” - then how can we support our Canadian friends to change their policy and regulations - or is there a proverbial third rail here that no one wants to touch (and why)? It’s a new interconnect world where we all must strive to work together no matter the colors on the flag.

I could imagine the Canadian Parliament wanting to keep all of the charity funds in Canada to bolster their economy and research, but it is also a bit short sighted to think that they can’t or shouldn’t aggressively support research in their 10x the size southern neighbor or the rest of the world for that matter.

In the US, we are allowed to fund worthwhile research and other projects in any country as long as it is consistent with our mission. We must be public benefit to gain a US 501c3 tax exempt status, and so we are always mindful that what we do must have some benefit for US families … but for right now, for example, all three of the MLD clinical trials are in Europe and most of the basic science work that needs funding is in Europe. Our support of that work will bring benefit to US families.

→'''Responder 8''' replied:

We have literally JUST undergone the process of supporting the incorporation of what will become an “affiliate” of the Preeclampsia Foundation in Canada so these questions are fresh in our minds. Canada does not completely restrict the use of funds outside of Canada, but does place some fairly reasonable (IMHO) restrictions so that our fundraising efforts in Canada don’t only flow outside the country. They have somewhere in the neighborhood of 500 authorized 3rd party entities (e.g., academic institutions, other non profit organizations) outside of Canada that can accept grants and donations from Canadian organizations. In addition, a Canadian charity can “hire” a non-Canadian vendor to help them accomplish their mission. That could be a US charity providing technical assistance, for instance. They would look unfavorably to ALL the money leaving the country.

The regulations are all out of CRA and are pretty clear on this point. Where I believe they get ridiculous is that they don’t consider the distribution of printed or other multi-media materials on a health issue an adequate education strategy. And forget “awareness” - does not register as a mission area. I.e., they are very old school in terms of how public education happens around a health issue: organize a patient symposium, bring in didactic speakers, etc. I wouldn’t dream of suggesting a social media campaign, for instance!

I like some of the creative approaches suggested by Sharon to expand the leverage of Canadian funds.

In my next life – or when I finally figure out how to replicate hours in a day! - I would love to partner on how to make our efforts far more seamless for globalized research and education. The borders are increasingly irrelevant. I actually had a donor ask me recently if research discoveries made in other countries would be known and/or used here in the US or if countries are proprietary about their findings.

==Donation Software and Databases==
Today there are many methods available to easily store necessary information on donations, like readily accessible software-based databases. One commonly used type of database is a Contact Resource Manager (CRM), which utilizes a database format to easily organize donors in a variety of different ways. While these systems are for the most part straightforward in their approach, a consultant may be helpful to you in efficiently using the software. For the most part, these CRMs also require a fee, generally paid monthly, to be paid to the software company. They are also generally readily accessible online from many locations. Here is a small list of some good options for CRMs, many of which offer free 30-day trials:

*[http://commonground.convio.com/?elqPURLPage=1228 Convio Common Ground CRM]
This works as an app on top of the Salesforce Platform mentioned above. This CRM offers a fully customizable system that is easily accessible due to its online nature.

*[http://www.donorperfect.com/ Donor Perfect]
Donor Perfect is a CRM that caters specifically to non-profits. It cites larger-than average increases in fundraising as one of its main benefits.

''Pros'' (thanks to Jean in 2016):
**Flexibility to add fields as needed
**Support/help staff is exceptionally friendly and helpful answering questions (we have unlimited support contract, which I recommend highly, at least in the beginning)
**Development is always working to make improvements and regularly update software based on customer comments on their user forum.

''Cons''

**Primarily geared towards fundraising, not patient/contact management
**Not able to create data reports for analysis of complex information. Reports offer very basic information. (although this is an area that they are working to update)
**Weblink Download forms for use with event registrations can have significant limitations.
**A lot of manual data entry is needed to maintain the accuracy of the information.

*[http://www.towercare.com/nonprofit-fundraising/nonprofit-software-satisfaction Donor Pro]
Donor Pro is another non-profit-specific CRM. Donor Pro offers "householding" which tracks the names, e-mails, and other important information of the people in the household. Offers mail merge capability and/or export functionality so a mail merge can be done through Excel.

:-We are a small start-up and selected Donorpro – cost is $205/month for unlimited users. Best investment we made!

:-We are currently using Donor Pro but had used Sage Fundraising 50 for 13 years before making the change. Both are very good systems, the reason we made the change was that we need to track more extensive “non-donation” information for our Support Services department.

*[http://www.microsoft.com/en-us/dynamics/crm.aspx Microsoft Dynamics CRM]
This is Microsoft's version of CRM software. Microsoft offers personal quotes to potential customers of its CRM. They also offer a wide network of partners to help customize their CRM for your needs.

*[http://www.salesforcefoundation.org/ Sales Force Foundation]
Applying to the Salesforce Foundation can get you access to everything in the Salesforce app network. Many of these apps have special or reduced nonprofit pricing. Nonprofits may be eligible to receive up to 10 licenses as a donation.
Here are some experiences using Salesforce on its own or in conjunction with our programs:
:*I served on a task force to assist a large nonprofit, [http://9healthfair.org 9 Health Fair]- to choose an appropriate database. We evaluated many products, and we eventually settled on SalesForce. However, 9Health Fair is a large organization with an IT specialist and they had budgeted over $100,000 to develop and implement a custom application built on SalesForce. They were shopping among products such as Blackbaud and other top ranked nonprofit databases. They spent well over $10,000 just to hire consultants to help them evaluate database products and assess fit and implementation! I was on the team that selected the consultants. SalesForce is open-source software. An analogy: Compared to a move-in ready house, SalesForce is a lumberyard and a tool box. If you want a house, buy a house. If you want to build a house, the lumberyard is a great place to start, IF you know how to use the tools. SalesForce is a VERY powerful relational database that needs to be tailored to your needs. It’s also useful for VERY simple applications. But if you need a sophisticated application, unless you are somewhat expert at building nonprofit databases, it’s not really a DIY (do it yourself) project.
:*We are using Salesforce Platform and Common Ground (which is changing names to two different products: Convio Luminate CRM and Convio Common Ground d) and have been since 2009. Convio Luminate CRM connects with your Convio Online Marketing (now Luminate Online) systems. Convio Common Ground is a stand-alone product that lives on top of the Salesforce platform and does not connect to Convio Online communications and fundraising systems but has them internally, again driven by what apps give you those functions via Salesforce App Network. All these are technology options that give you capabilities, but all of them require an investment in staff to use them to their full potential – which is VAST. The main advantage over traditional donor databases (DDB) is that:

:::--It is cloud-based so geographically disbursed staffs make easier use of this than a server-side solution

:::--It is customizable to reflect your own organization’s work processes rather than being constrained by DDB’s methods you have to adhere to in using the DDB or develop work-arounds to reflect the way you actually work, what information you want to gather about a constituent besides their donor status and transactions with your org.

:::--It can scale easily as you grow without having to change systems.

:::--It is not expensive for NPOs but very valuable – for commercial companies using Salesforce, these same 10 free seats would be about $15,000/yr.

:::--Everything in the APP world has or is developing APPs that plug in to Salesforce. It is mobile-ready, accessible through all devices, and not going anywhere because of the strength of the company’s commercial client base that subsidizes the NPO users.

:*We use Salesforce - they have a free non-profit version and then as you grow you could potentially pay to get it customized for you. Food for thought. Salesforce does have training and support as well. We aren't in LOVE with it - but it runs Fortune 100 companies so we know it can grow and scale.

:*For anyone using Salesforce - we tried it but I really felt like we needed a consultant, asked two people I work with for recommendations and they both hated their consultants, so I gave up on Salesforce.

:*Some have also used Salesforce to follow up with new members at set time inttervals.

You may also benefit from downloading this CRM review [https://www.blackbaud.com/online-marketing/website-management.aspx article].

==Donations By Text==
This thread is organized to answer the following question about donations by text 2014:

→'''Inquirer:''' ''Can anyone recommend a company that works with smaller charities that want to collect donations via phone text? Everyone that we have found requires a minimum charity income of $500,000.''

→'''Responder 1''' replied:

This isn't exactly what you asked for, but the EveryLife Foundation features a rare disease charity each month and provides a text number for $10 donations to benefit the charity. They also match the first $1000 raised. You can get more information and a link to an application here: http://www.everylifefoundation.org/t2d/

==Online Donation Payments==
This thread is organized to answer the following question about online payments for donations asked in 2014:

→'''Inquirer:''' ''Does anyone have good experience with other on-line credit card processing companies? We're going to have to make a change or stop accepting on-line donations. We're losing too much of the donation to fees, not good for a 501 c 3 who tries to use each penny wisely.''

→'''Responder 1.2''' replied:

We are set up with PayPal and I am not aware of related spam or unwanted email. PayPal offers a discounted rate to non-profits.
https://www.paypal.com/webapps/mpp/donations

We are also set up with Stripe so that we can key in donations, but have never needed to use it yet:
https://stripe.com/

→'''Responder 2''' replied:

We use Blackbaud. Fees are high, but they do a good job.
I’m also interested in hearing if any of you are using text to donate services and what you think. What are fees, etc.?

→'''Responder 3''' replied:

We just recently made the jump to BluePay for our credit card processing; it is set up through our database provider, Bloomerang. Bloomerang is a cloud-based donor management system. We can accept donations online through a “widget” (form) that Bloomerang created which is fully integrated into our database upon payment. This has increased efficiency in entering donations by about 75%. Before, it was a manual process with our bookkeeper; we have used PayPal and Network for Good in the past. We still have those available, too.
I couldn’t be happier with the service at Bloomerang, and I’m glad to talk you through any of this if you are interested. I realize that you only asked about online payments, but since our payment system is integrated into our donor management software, I wanted to share that as well.
This is what it looks like: https://www.barthsyndrome.org/waystohelp/donate/donate.html

→'''Responder 4''' replied:

We have seen an increase in online donations since switching to this online form. We have been told that it is best to keep donors on your site, rather than take them to a third party (like PayPal). There is less drop off since there are fewer clicks. “Donors Prefer Giving on a Nonprofit’s Website: Multiple studies have shown that incorporating donation functionality into your website can help facilitate fundraising success. One online fundraising study found that the average nonprofit with a donation page within their website raised five times more than a nonprofit that sent donors to an external, unbranded donation site.” http://wiredimpact.com/library/get-more-online-donations/

Responder 4’s response to responder 3:
When I attended a class at IUPUI, someone asked about texting to give. The consensus, by far, was to avoid due to heavy administration, large fees, and delayed/contested payments. It might work for very large organizations (Red Cross), but isn’t ideal (as far as I’ve researched) for smaller groups like us.
Responder 5: Ditto on PayPal.
We get zero complaints about PayPal...including no comments about any unwanted marketing from PayPal.
We use it directly and via our online “shopping cart” (part of our website).
On the other hand, when a “nonprofit database” such as Blackbaud or similar has a built-in credit card processor, there are few complaints from “customers” there either. I worked as CFO of a large national organization, and we had our own “merchant services” processing through Key Bank, and none of our constituents batted an eye.

→'''Responder 6''' replied:

We had nothing but problems with pay pal. High fees and security issues. And zero customer support. We now have processing going through Chase. Lower fees, great in-person support and no hassle.

→'''Inquirer''' replied:

Appreciate all the responses, keep them coming!

Two members of my Bd. have had bad experiences with PayPal so have nixed that. We don't have any type of data base since we don't solicit. As a small, all volunteer organization we keep tasks to a minimum if possible.

Looked into moving our credit card processing to Chase (where we bank). Had everything in place then they told us we needed to have a full financial audit, at a hefty cost, and we weren't in a position to do that. End of that discussion.

Your comments will be helpful as we discuss this further.

==Acknowledging Donations==
Writing thank you letters to donors serves three important purposes:

*Thank you letters acknowledge the donor's contribution.
*They help cultivate a relationship between the donor and the organization.
*They substantiate donations for donors who need their contributions documented (usually for tax purposes).

In addition to these thank you letters, some organizations also send out an end-of-the year acknowledgment recognizing donors who contributed over a certain dollar amount. In other cases, such an acknowledgement is only created for donors who give monthly through an electronic transfer.

Over time, organizations can see an increase in the number of donors, which is a great thing! But as you have more donors, you might have to re-evaluate if your process for thanking them is efficient and sustainable. Here’s how some groups determine who will get a more personalized acknowledgment for their donation:
*We only send out the letters for $25 and up unless it is a child's grandparent or someone very involved in our group.
*For $250.00 and over donations, donors receive a tax deductible receipt and a handwritten thank you from the foundation. If the donation is made in honor of a family, the donor receives a thank you and the family that the donation was made for receives notification that a donation was made in their name to the foundation. For anything under $250.. their check, PayPal receipt or credit card statement serves a their tax deductible receipt. Same as above, the donor receives a handwritten note from the foundation etc etc etc… A personal note is always nice. I can see that when a foundation gets bigger and bigger this can be quite a job for one person. There are times the foundation receives donations in huge doses and it can be a big job for our one person who hand writes all of the foundation thank you notes.
*We send a thank you to everyone who donates, regardless of the amount. I’ve noticed that those $10 donors are usually seniors who are really interested in supporting our cause but simply can’t afford to send more. I find that very worthy of a thank you. We do not hand write the acknowledgement – we have a postcard filled out with blanks for the name, date of donation and amount of donation so we simply fill that in manually and mail (in an envelope). We send different ones based on whether they are donating in honor of someone, memory of someone, to our Research Fund or for some other specific cause. We notify the families via e-mail if someone donated in their honor or memory. If it is a larger donation ($1,000 and up) I will type a letter to that donor and be more specific about their donation and what it will accomplish. We used FirstGiving for the first time this year to handle our 5K Run/Walks around the country (online company that handles registration, pledges, etc) and they sent out e-mail thank you messages and tax receipts to all who donated so we did not duplicate those efforts and simply acknowledged the donors in our newsletter.
*[http://www.afpnet.org/ Association of Fundraising Professionals] is the group that I usually turn to ascertain “best practices” on questions like this says that donors deserve acknowledgement of their gift (which I take to be the thank you/receipt) within 48 hours of receipt. We can accomplish that for all online givers (thankfully the majority of our donations) but can’t yet with current staffing levels for our “offline” donors that send checks in the mail. We manage about a week to 10 days from receipt. A personal thank you can follow that time frame. Additionally, we have to respond in this same time frame with the honoree families the donor wishes to know of their gift as a large majority of our donors are giving “In Memory of/In Honor of” donations for a child lost (most often) or living with the disease.

:Our strategy was/still is to invest in CRM systems and online fundraising systems synced with them that allow us to provide that “minimum” as automatically or automated as possible and to minimize the amount of hours required by staff member to accomplish this recurrent task. That being said, we do respond differently based on the level of donor giving that we outline in an internal Donor Recognition Policy/System. At various levels, a matrix of responses is outlined as a mixture of “automated thank you/receipt only,” hand written thank you from staff, same hand written card from Executive Director, same hand written card from Board Member, hand-written card accompanied by “Constituent Thank you letter” telling donor how much their donations help THEM, phone call from staff or Executive Director or Board Member. Top level would be a personal thank you visit of some kind – invitation to event, personal coffee or lunch, etc. The value of these personal responses at higher levels is high because it also gives staff/Me as ED/Board Members a chance to learn more about this significant donor’s interests and capacity so that we know what types of programs/projects/issues are closest to their heart motivating them to give and prepares us for future solicitations by knowing what dollar levels are reasonable to ask for to help invest in what types of initiatives/solutions they want to see. Bottom line – we couldn’t handle the volume we do responding to donors and honoree families without our CRM systems well-developed.
*It is important to send the contact info to people where a donation “in honor” or “in memory” has been made so that they are able to thank the donor.

==Donor Relationship==

One way to build trust and relationship with your donor is to help her understand the process your organization uses to review grant requests. Help her to understand your review process and why you trust those who review grants for you, share their credentials and experiences, and why it's good - even for you - to have some arm's length expert review so we don't let our emotions and enthusiasms for a particular researcher unduly cloud our judgment. Let her know it's not just up to you to make this decision, you have experts helping and guiding you.

And often your grant is not in a vacuum. Her favorite researcher may have other sources of funding so their work with get done with or without your funding, while a second researcher may not be so fortunate. These added perspectives are something you may know but the donor does not - and most researchers are pretty good at not sharing the breadth of their funding to particular donors. Let her know your desire for your ultimate decision is for the best for the whole specific disease community, not just one research project. Be sure to verbalize (but it does not have to be in writing) that the arm's length nature of the donation (other than disease restriction) makes for a better use of funds and is required for tax deductibility per IRS Pub 526.

We often find in our community the families who have had a close contact with a researcher (clinical trial, evaluation, therapy) often "fall in love" with the researcher/clinician, their work and prefer to fund it over other work. We think this is because we want to believe that whatever therapy their loved one had will (and did) work - this is the hope we all need when we have uncertainty and are desperate. This creates a "shared" experience, often reinforced and strengthened by the stress the family was/is under that leads them to trust and want to further invest in that researcher. Although sometimes it's just geographic, something they read, someone's alma mater, a fried/family member's "successful" encounter, etc. I am not sure if any of these are the experience of your donor but perhaps you can get her to resonate with this which might help her to give your space to work your process while not cutting her out of the confidence and trust you want to build with her.

We also tell families, donors, industry, and researchers that we like to "bet on all the ponies" and we hope they all win. Then we have more learning, more choices, more sharing/collaborating, and perhaps in the future more effective combined therapies, etc.

From a pure practical perspective, I might suggest that even if you explain all of this to your donor and she agrees, it might be prudent to very quickly create her acknowledgement letter (which hopefully is pretty much of a template anyhow), personalize it to acknowledge the size of the gift, and spell out that the donor received nothing back (boiler plate), and then add a sentence that the donation will be combined with other funds focused on disease ABC (her request). Then generically state that projects are funded based on the expert grant review committee's recommendation. Also say you will keep her updated on the progress of all of the organization's research (not just one project - don't connect the dots to make the project "hers"). If she balks when she receives the letter and asks for more control you will know quickly and then can decide if you are better off to just give her gift back or if can continue to educate her to give you the space you need.

No amount of money (IMHO) is worth alienating a single donor who can communicate her frustration with your other donors and supporters. Do not get attached to the money ... if she walks from you, you still want her to donate to the specific disease research. If this donor is so hard set on funding a particular project, she will surely find a charity that is more concerned about the size of the numbers on their form 990 than their integrity and IRS compliance (or she will form her own 501(c)(3). In the grand scheme of things the funds still end up in your disease community so that is a good thing, even if the project is not your review committee's first choice for funding or it's not the most efficient project.

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Building a Website]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Events]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[People and Roles]]
*[[Recruiting]]
**[[Publicity and General Media]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Social Networking]]
*[[Taking Credit Cards on the Web]]

Building a Website

2018-06-22T14:13:51Z

Aguise: /* Evaluating Your Site */

Websites can be an excellent way to reach a wide audience quickly. They have the potential to provide much needed quality information about conditions to individuals who are researching them independently. In a lot of cases, they can be a first or early source of information on genetic disorders. A well-designed website that gets a lot of traffic can be an enormous asset. There are no hard and fast standards as far as content. However, Genetic Alliance's Access to Credible Genetics Resources program has toolkits addressing this, and many universities also have suggestions and scales to rate resources.

==Tips Before You Start==

There are dozens of books and websites that discuss the best way to design a site for specific purposes, and some of the most important guidelines are these:

*Use images carefully, and pay attention to their size—they should load easily even using dial-up connections.
*By all means, use color as a design element, but for sections of the page where there are chunks of text, the most legible combination is black text on a white background.
*Consider accessibility issues—can a user with low vision using a voice browser understand the way information is presented on the page? How about a color-blind user?
*Avoid animations and movies. Animations distract users. Flash is a popular software for creating animated websites or serving miniature movies, but it has virtually no accessibility features for sensory-impaired individuals. Using these techniques on your organization's site will limit your audience and may detract from your website's purpose: to share information and link members.
*Keep it simple. The simpler your site is, the easier it is for your users—and for the people who update it.

==Making a Website==

===Web Site Hosting===

If your organization is interested in building your own web site, you'll need to choose an appropriate 'host.' In deciding what host to use, it's important to consider what components you want your site to have such as text and graphics only or extras such as a store or message boards? Other things to think about include: Does the host offer the following - mysql - for a database? PHP - for making dynamic websites? or Email accounts? How much bandwidth will you be allowed each month? How much storage will you have on the website host? How good is technical support? Is it by phone or email? How much will it cost per month?

Here are some companies that other organizations use:
*[http://www.GoDaddy.com GoDaddy] - "GoDaddy are OK but as a web host they are not one of the best or the most reliable.
One common problem is they make it very difficult for the customer to transfer domain names - The web address of your website to another web site host. Another big problem is spam.. and we all hate spam. Some customers have complained that there website name (domain name) is easy to use by hackers and spammers because they charge extra for privacy and security tools. Now don't get me wrong I am not saying don't go there, because they have a lot of happy customers, Just be careful."
*[http://www.webtrix.com Webtrix] - "Very reliable and helpful. Easy to get in contact with when you have questions."
*[http://www.datarealm.com/ Datarealm Internet Services] - "We have used Datarealm Internet Services for years and been very happy with them. I think their non-profit rate is about $49.75 for six months."
*[http://www.aspwebhosting.com ASP Webhosting]
*[http://www.rackspace.com Rackspace] - "I've found them responsive and their web interface is very easy to use. In addition, they have a lot of room for expansion and offer many backup options to keep your website up and running."

===Web Site Designers===

Many organizations are finding designers to build intricate sites for them, in order to provide sophisticated services like message boards and databases of resources for disorders. Hiring a web designer to do freelance work is a reasonable option for advocacy organizations, especially if there is not enough work or monetary resources to support a full time employee. In order to circumvent this problem, it might be possible for multiple orgs to hire a professional and give them work on a contractual basis so they would have a full workload. It would be also a great introduction for them into the non-profit sector. Another option is to ask volunteers to build and maintain the website. This could work for specific sites and orgs, but volunteers usually work on a very flexible schedules, and may not be able to respond to immediate website needs. Consistency is the important thing. It is extremely beneficial if the website is constructed with solid code and updates are made regularly.

Many web designers have websites, like this:
*http://www.yourgraphicsguy.com
*http://www.webtrix.com (Good for hosting and designing complex features like shopping carts, and you can do maintenance yourself.)
*http://www.kineticsolutionsservices.com/
*http://www.novelprojects.com/
*http://www.studio162.com

Here's a list of companies that other disease-specific organizations have used and approved of their work:

*[http://www.aimg.com Accurate Imaging]
*[http://www.cermack.com Cermack]
*[http://www.firespring.org/ Firespring] - One group said "The top selling points for us included their beautiful responsive design templates, their focus on nonprofits and integrated tools like email marketing, donor management and fundraising campaigns. I have only good things to say about this company. Their customer support is fantastic." And another added "We also started using Firespring just last year and we have gone from the expense of needing to use a professional Webmaster to add news and make adjustments to our site to now where a few of us are able to keep up with our site, add calendar events, News, and the latest research on HSP and PLS for our community. The system is really easy to work with and our costs have gone down dramatically."
*We hired a wonderful company called iFactory, based in Boston. Kimberly Emrick was our contact and she was outstanding. They developed a very good understanding of accessibility issues as well, since our agency worked with people who are deafblind.
*A wonderful digital partner, OneUpWeb (we’ll continue a long-term partnership with them). They truly sought to understand the needs of our genetic disease and patient community and we couldn’t be happier.
*I got and get help from Steve Shoffner at www.fefifolios.com. He mostly designs websites for artists. He guided me to learn enough so I can make changes and even take on some designing. At first he was concerned that he didn't know anything about what our organization does, but once I encouraged him that it's all the same in terms of information-sharing and user experience, we worked well together. For content, I had to do the heavy lifting and look at other examples, and think about how to organize the info. It's more work, but it costs less overall, and I'm empowered to keep it up-to-date. It was much less work than I thought it would be!

==Using a Content Management System==

Content Management Systems can be both a great help and a great hinderance in designing a web site. With some content management systems, groups find them to be inflexible and feel "trapped" in not being able to meet their needs, while other content managemen systems work well. Here are some tips from groups that use them:

*Joomla is a super system for developing a CMS website. Best of all it is free to use. It has a huge community of users, with a massive range and style of websites. The joy of setting up a website using it is that the site can be as simple or complex as you need, and the site can grow with you, by adding plug-ins and other tools to meet your needs. Lots of templates to get you going so if you find one you like, you can be up and running in under an hour. For a small website it can be a bit big, but on the whole it is great.

*A small site can be developed using WordPress, although normally used for blogging, Wordpress is a very powerful CMS tool. You can have a play with wordpress at no cost by going to [http://wordpress.com here]. You can sign up and create a site on the wordpress servers, and if it works for your needs, you can go to [http://wordpress.org here] to download a copy to install on your own server. It is also free.

*A few basic requirements you will need to check with your web hosting service no matter what CMS system you choose to use:
**Ask if you have PHP - version 5 is best but you can get away with a lowerversion numnber (not recomended though).
**Also you need a MYSQL Database on your hosting package.
**Your Hosting also needs to be on a LINUX server (Not a windows server.)
**If your hostimng meets the above requirements you are fine, otherwise for any free CMS you may need to switch or upgrade your web hosting package.

==Evaluating Your Site==
It is a good idea to evaluate your website every once in a while to see if it is functioning at its highest potential. There are some services out there that can help you with your evaluation.

WebXACT (formerly BOBBY) is a web-based service that checks sites for accessibility. It evaluates your site and lists recommendations to improve accessibility. You can ask it to use the World Wide Web Consortium Guidelines (available at W3.org) or [https://www.access-board.gov/guidelines-and-standards/communications-and-it/about-the-section-508-standards 508 Guidelines].

W3 and Section 508 rules are for format. Consider guidelines for content, as well. We recommend [http://www.hon.ch/HONcode/Guidelines/guidelines.html] on the Net Foundation—Code of Conduct. This code has guidelines for authority, accountability, and attribution that form a solid basis not only for designing your site's approach to information but for evaluating other sites as well.

== Evaluating Resources ==
One of the main services advocacy organizations can offer through their print and electronic tools is providing quality and accurate information about a condition as well as helping people sort through health information found from various other sources.

Help ensure your organization's materials are of the highest standards by creating or updating them with the assistance of the developer's version of the [http://www.trustortrash.org/developer ''Trust It or Trash It?''] tool.

Your members may have many places they find information other than your organization. Encourage them to use the [http://www.trustortrash.org ''Trust It or Trash It?''] tool to critically evaluate health information. You can even include a widget on your site that allows users to simultaneously see the content of interest and the tool. To learn more visit [http://www.youtube.com/geneticalliance#p/u/6/IKa7BlKpPZg Genetic Alliance's YouTube Channel].

==Factors to Consider==
*The complexity of the site design
*Resources available to the organization for site design
*The cost of professional site help
*The potential of the site for growth and change (especially complicated additions like message boards and shopping carts)
*Location! Prices for web design services tend to vary; they are generally higher near large cities.
*Some designers pay per page, and often prices vary based on the amount of coding that needs to be done.
*It is always worth writing to the CEO of the hosting company you like the look of. Often you may either get a good deal or an offer of free hosting.
*On the subject of domain names... A lot of nasty people may see your domain getting traffic and set up a copy cat advertising domain trading on the miss typing of the charity domain. They set up a single page advert site. It is worth investing in the main names for your site to avoid this situation and to protect your intellectual property.
*Make sure your website is accessible to those with visual impairments. You can use http://wave.webaim.org/ to help with an assessment.

 It's worth shopping around based on your organization's needs!

While on the topic of intellectual property rights, it is important to note that it is also possible for people to steal images that you post to your site. Thus, it is important to consider the possible measures that can be to taken to reduce or eliminate the likelihood this unfortunate circumstance could occur. Below are some thoughts on this, along with some mechanisms organizations utilized to keep their photos protected.

Jean Pickford

Foundation for Ichthyosis & Related Skin Types, Inc.

“ The Foundation for Ichthyosis and Related Skin Types, Inc. (FIRST) represents patients with a very visible and disfiguring genetic skin disease. We have consented photos on our website that show the various forms of the disease, ranging from newborns to adults. There have been occasions when our photos have been copied from our website and posted on social media sites to gain attention/followers. In one case last year, a photo of a harlequin ichthyosis newborn was taken from our site and posted on Facebook, which went viral (i.e., one like = one prayer for this baby) with more than 2 million likes & more than 30,000 comments. Needless to say, some of the comments were nasty, like “this is a reptile baby” or “it’s an alien, put them out of their misery.”

Some of us here at FIRST feel very strongly that it is our duty to protect these photos from any exploitation on behalf of those we serve, and thus, they should be “watermarked.” However, others feel very strongly that a watermark detracts from the purpose of the photo in helping physicians, families, and others who are trying to learn about the disease.

In discussing it with some of our board members and web admins, we have added a “blocker” that pops up when you right click any photos on our site as well as a watermark on the images, so if they are taken without permission, they can’t be used. An example of this can be viewed at: [http://www.firstskinfoundation.org/content.cfm/Ichthyosis/Harlequin-Ichthyosis/page_id/547 FIRST Harlequin Ichthyosis].”

Janet Long

US Hereditary Angioedema Center

“The website where we host our images is: [https://www.haeimages.com HaeImages]. With so many players in our “HAE space”, we found our web site images appearing in good places and bad. Therefore, we organized an image repository where patients could donate images and we could somewhat handle their use via the sale of them; the sales could in return support new research.

It has been as successful as I could have hoped, I think, in keeping our images safe.
However, there are still images taken from our web site (we did not watermark them, but instead trademarked the web site and this is usually enough to scare folks off from stealing….)”

“For the specific issue of a forum, some web development companies could be a good fit for advising on this. I'd strongly recommend finding a stable off the shelf solution rather than trying to roll your own unless you have mountains of money to throw at it. If you identify the product that you want to use, then sometimes the company that develops the product can recommend experienced implementation people.”

Christy Collins

M-CM Network

==Search Engine Optimization and Helping People Find Your Site==

Search engine optimization consists of identifying search terms (or "keywords") that people who are looking for your site are likely to use, and then optimizing the content and code of your website for those terms. Additionally, your placement in search results is impacted by the volume and content of other sites that link to your website. Working on search engine optimization shouldn't significantly alter your activities or site content. Rather, an awareness of the principles of search engine optimization will inform details about how you present your content and interact with other websites.

===Generate A Keyword List===

The first thing to do is generate a list of keywords, or search terms, to target. This list may include all of the disease/syndrome names that your organization covers (including acronyms, abbreviations and variants), significant symptoms or signs, and anything else that a person might punch into a search engine when they are looking for the information that your site offers. You may want to survey some new members to see if they looked for you via search engine and if they remember what words they searched for. Once you have this list, sort it by relevance.

===HTML tags for SEO===

Important html tags for search engine optimization are fairly simple.
* The most important tag is <title>. The <title> tag doesn't actually appear on your web page, but rather in the top of your browser window. It will be used as the title of your search result listing on Google and the default title if your page is shared on Facebook.
* Next are heading tags: <pre><h1>, <h2>, <h3></pre> With h1 being the most important. Survey your site's content for places that you can sensibly fit your keywords into these tags.
* Set a meta description tag for the most important pages on your site and consider using your keywords here. Like the <title> tag, the description tag doesn't display on the site, but it has a lot of utility for other sites that parse your content. Besides search rank, Google uses it to display in it's search results. It is used on Facebook when your page is shared on a user's wall. This tag looks like: <pre><meta name="description" content="My page description." /></pre> Google will display the first 150 characters in the content attribute, you should try to keep the size of your description in that range.

===Incoming Links===

There is much nastiness on the internet due to the fact that incoming links boost search rank. Fortunately for many of us, our search terms are so obscure that we don't have a lot of competition for rank, and a little bit of effort with integrity should go a long way. The most important detail to know is that linking a keyword to your site will be much more powerful than linking a generic phrase like "click here" or "link".
Some simple suggestions:
- If you get media publicity, make sure that any internet version of the article correctly links to your site. If it doesn't, politely request that the link be added. A newspaper is not obligated to to do this, but it's worth asking.
- If you have affected families, fundraisers or board members who have their own blogs or websites, suggest ways that they could link to you if they are not already doing so. You may even want to offer badges that link to your site.

===Other Traffic===

* Facebook has potential for generating valuable traffic to your site, although most Facebook linking will not affect your Google search rank. Add Facebook "like" and "share" buttons to your site. Take a look at the default content that Facebook displays when a page on your site is shared to verify that it's accurate and helpful. This will consist of your <title> tag and meta description OR largest block of paragraph content if you don't have a meta description.
* Wikipedia links also do not contribute to search engine rank. However, when searching on medical terms and syndrome names, Wikipedia results often come up in the top three results. Make sure your organization is linked to from the links section of the wikipedia page/s for your disease. If your disease doesn't have a wikipedia page, make one.
* Be sure your disorder is listed on the appropriate databases, that the information is current and accurate and that your advocacy site is linked to. [[Information about Rare Genetic Diseases|Disease Databases]]

==Internal Links==
*[[Becoming the Organization You Imagine]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[People and Roles]]
*[[Recruiting]]
**[[Publicity and General Media]]
**[[Media Tips]]
**[[Recruiting Celebrities]]
**[[Health care Providers and Specialists]]
**[[Attending Professionals' Annual Meetings]]
**[[Internet and Web Resources]]
**[[Using Search Tools to Get Found]]
*[[Social Networking]]
*[[Taking Credit Cards on the Web]]