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.

==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.

*[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.

*[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:
1.It is cloud-based so geographically disbursed staffs make easier use of this than a server-side solution

2. 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.

3. It can scale easily as you grow without having to change systems.

4. 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.

5. 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.

You may also benefit from downloading this CRM review [https://www.blackbaud.com/online-marketing/website-management.aspx article].

If you are just starting up and trying to choose a donor management system, here are some comments on different organizations' experiences with different systems in relation to their size and needs:
*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.

==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.

==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]]

Advocacy Admin: Adding thread topics

== Request an Account ==

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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"
|'''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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{|style="color:black;width:99%;background-color:#cedff2;font-weight:bold;bolder:1px solid #a3b0bf;" border="0" cellpadding="5" cellspacing="2" align="center"
|''' Assessment|Organizational Assessment '''
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*[[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?]]

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|'''[[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]]

|-
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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]]

|style="width:50%;background:#f5faff; border:1px solid #cedff2; color:black;align:center;vertical-align:top"|
{|style="color:black;width:99%;background-color:#cedff2;font-weight:bold;bolder:1px solid #a3b0bf;" border="0" cellpadding="5" cellspacing="2" align="center"
|'''[[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]]

|-
|style="width:50%;background:#f5faff; border:1px solid #cedff2; color:black;align:center;vertical-align:top"|
{|style="color:black;width:99%;background-color:#cedff2;font-weight:bold;bolder:1px solid #a3b0bf;" border="0" cellpadding="5" cellspacing="2" align="center"
|'''[[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]]

|style="width:50%;background:#f5faff;border:1px solid #cef2e0; color:black;align:center;vertical-align:top"|
{|style="color:black;width:99%;background-color:#cef2e0;font-weight:bold;bolder:1px solid #a3b0bf;" border="0" cellpadding="5" cellspacing="2" align="center"
|'''[[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]]

|-
|style="width:50%;background:#f5ffa;border:1px solid #cef2e0;color:black;align:center;vertical-align:top"|
{|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]]
*[[General Resources]]
*[[Information about Rare Genetic Diseases]]
*[[Matching Resources]]
*[[Meet Your Neighbors & Organizations]]
*[[Publications]]
*[[Resources for Nonprofits]]
*[[Sibling Support]]
*[[State Registration]]
*[[Travel]]

|style="width:50%;background:#f5faff; border:1px solid #cedff2; color:black;align:center;vertical-align:top"|
{|style="color:black;width:99%;background-color:#cedff2;font-weight:bold;bolder:1px solid #a3b0bf;" border="0" cellpadding="5" cellspacing="2" align="center"
|'''Speakers Bureau'''
|}
*[http://genomicsforum.org/?page=MDirectory Genomics Forum Directory]
*[[Individual Speaker Recommendations]]

|-
|style="width:50%;background:#f5faff; border:1px solid #cedff2; color:black;align:center;vertical-align:top"|
{|style="color:black;width:99%;background-color:#cedff2;font-weight:bold;bolder:1px solid #a3b0bf;" border="0" cellpadding="5" cellspacing="2" align="center"
|'''[[Discussion Board Topics]]: EDUCATION'''
|}

*[[Fundraising/Third Party]]

Fundraising

2015-06-17T13:40:26Z

Advocacy Admin:

Fundraising

2015-06-17T13:37:20Z

Advocacy Admin: Added Examples of Fundraising Policies

Conferences, Workshops, and Meetings for Affected Individuals

2015-03-25T17:45:44Z

Advocacy Admin: /* Tips for Getting Funding */

Conferences, workshops, and meetings are effective ways to teach your membership about your organization's condition and to create and strengthen your members' sense of community. Creating these events involves two major tasks: determining the scope and objectives of your meeting, and doing the logistical planning for the event. You can read some examples of other conferences at our [[Setting Up A National Conference]] page.

==Determining the Scope and Objectives of Your Meeting==

Conferences include many sizes and types of events. They can be as simple as an afternoon session with a speaker followed by some social time, or as extensive as a lodgings-based multiday event with a mix of speakers and activities and with meals served on site. Consider these issues as you plan conferences:

*Your members' interests
*Your goals for serving your membership
*Costs
*Available resources

When creating a new conference, survey your members. Ask them what they want from a conference, how much time they would want to spend, how far they would be willing to travel. Ask them what they can afford, and get a sense of how many interested members would require financial assistance. Even if you know for certain that your members need a certain kind of conference or educational experience, the starting point should be what they want.

This is initial part of planning is where you can ask open-ended questions, such as "what time of year works best for your family?"

Tips for Date Selection

#Spring and fall meetings have good attendance. Families may travel during the summer, so offering the meeting as a vacation may have appeal. Winter storms can hinder travel.
#Off-season times (March to early April, mid-November) may offer better opportunities to negotiate travel and hotel rates.
#Consider holidays as you plan events—not just major holidays but feast days and other observances, depending on your members' affiliations. Holidays (such as Memorial Day, Independence Day, and Labor Day) can mean lower rates for hotels in business cities.
#Know when specialists that focus on your organization's condition go to their professional meetings. You may lose potential speakers if your conference coincides with meetings they must attend.

==Your Members' Interests==

Ask them what they want. This is their conference, and it cannot succeed unless it meets real needs. Some questions to consider: do they want a one-day conference or something longer? Do they want to meet on a weekend or weekday? Are there particular holidays that could coincide with this conference? Are there holiday periods you should avoid? What can they afford?

Answers to these questions will help you get a sense of how many people will actually come to a conference, a crucial starting point for planning location and activities.

==Your Goals for Serving Your Membership==

This is where you reconcile your sense of what your members need with what they want, and where you use what they want to create a curriculum for getting it to them. They may say their top need is to learn how to work for a cure for their children. This could translate into a conference in which they get talks about the current state of research from scientists along with workshops about informed consent and donating tissue.

==Costs and Scholarships==

Travel distances, lodging options, speaker costs, and supplies for the meeting will all figure into your final budget. It takes time to establish the details of this budget, but you'll need to start with a ballpark figure. As you consider what your families want and what your organization needs to share with them, you need to go beyond what families can afford and have a good sense of what your organization's costs will be. Consider name badges, signs for the conference site, packets for the members, registration forms, mailing costs, equipment rental, honoraria or gifts for your speakers, day care, etc.

Many organizations provide financial assistance to some of their members. To learn about some of the scholarship programs offered by other organizations, visit [[Scholarships for your participants/families/members]] and [[Setting Up A National Conference]].

Here is what one health advocate had to say about an organization's experience with conference funding and costs:

"We have had all our expenses covered for the past two conferences through sponsorships and low registration fees ($110 for the first family member, $90 for others; no fee for affected individuals or those under eight-years-old). We have a separate scholarship fund for needy families to attend and ask our donors to make a separate donation if they wish to help a family attend. We usually have enough to pay the registration fees and hotel fees for 2-3 nights for 7-10 families. We do not pay transportation. We go by the honor system. If they say they have a need and fill out the simple application form, then we try to help them. We give preference to first time attending families so if someone asks for a scholarship repeatedly I can simply say others that haven’t yet had a chance to attend have been chosen."

===Honorariums===
As for payment to speakers, groups are all over the place on this. Some pay none - though it is certainly just to compensate people for their time, it is hard to find funding for it. In some cases, groups fundraise for an event just for that expense.

For instance, PXE International, a very small organization (budget of ~$250K), gives an honorarium only when the speaker is critical to a meeting (a low vision specialist or plastic surgeon at a patient info meeting) and they can't find anyone else. They have paid anywhere between $100 to $500 for a workshop of a couple of hours.

Of course, top notch speakers charge a great deal - speaking fees for major speakers are in the tens of thousands and occasionally hundreds of thousands.

==Tips for Budgeting==

#Plan on about $1,000.00 per keynote speaker (travel, hotel, incidentals).
#You can negotiate almost any price when working with a hotel, especially if your attendance will be large.
#Plan on gratuities of about 25% for meals.
#You will always pay service taxes and may pay other taxes if your organization does not have state tax-exempt status.
#Don't forget conferences badges, printing and mailing costs, equipment rentals, gifts for speakers, and day care costs.

==Available Resources==

Consider in-kind and financial donations your organization can obtain. Is there a church that can offer space for your meeting? Are there manufacturers whose products your membership uses routinely? As with costs, you'll revisit resources as you do logistical planning, but a general sense of whom you can tap will help you scope your meeting effectively.

==Tips for Getting Funding==

#Exhibitor fees average $1,000.00 per booth.
#Give potential exhibitors about 6 months of lead time.
#If a company can't exhibit, ask for a donation. If you receive corporate sponsorships, make sure to provide them with a tax donation receipt.
#Do your members use specific products regularly, whether over-the-counter supplies or prescription medications? Ask the makers to exhibit or to provide a donation.
#If searching for a photographer or videographer to document your event, you may find success by reaching out to local colleges or universities. Students may provide this service for little or no cost.

==Logistical Planning==

Logistical planning revisits the same issues as setting scope and objectives, and you will also get feedback from your members in this phase, but the questions you ask will come with a range of options, as opposed to be open-ended.

There are several major aspects to planning a conference:

*Site selection
*Date selection
*Budgeting
*Funding
*[[Speaker selection and management]]
*[[Childcare]]
*Managing the timeline
*Photography or videography at the event
*Post-event communication

==Use of Breakout Sessions==

It seems to me that giving a specific task is always good, but only if that task reflects the collective needs of the group. I would recommend that you use one of the following approaches:

:Survey attendees ahead of time to find out what they think are some of the barriers and then schedule focused working groups around those topics. Send out a background document ahead of time detailing the responses to the survey and giving people some information so that they’ll come to the meeting prepared OR plan talks for that morning so that they give people background on those issues.

:Organize the morning presentations as panels with a lot of discussion. Make one of the goals of the morning to identify major barriers. Then have a planning group (a few people from the morning presentations) meet to come up with specific breakout questions. Have those same individuals serve as facilitators for those groups (so that they clearly understand the context of why they were chosen).

:Make the breakouts longer and use the first 30 minutes or so to establish shared challenges. Then have the group pick one shared challenge to focus on. It is important for this type of breakout that you have someone facilitating and someone paying close attention to time, since you have to make a transition from general to specific.

Also, consider using activities to help determine priorities for your community. For instance, I organized one session at the conference (that received very positive feedback) for which I used the following format:

*One, overarching 10 minute presentation to give context
*Short 5 minute presentations (these could be examples of actual research projects that have failed or overall presentations of barriers)
*Break the group into small teams (those sitting around them, 4-5 people max) to come up with solutions in 30 minutes
*One person from each group presents those solutions
*Each individual votes on priorities (this was specific to funding for our session, but could also be used for organizational priorities or something similar).

==Tips for Managing the Timeline==

#Start planning your conference 12 to 14 months before the date.
#Book the site 12 to 14 months in advance.
#Book your speakers 9 to 12 months in advance, but don't print those conference agendas quite yet!
#From about six months before the date, start advertising heavily to your members. They will need constant reminders. Get them excited!
#Request exhibits or donations about six months ahead, and follow up closely. Once you know your sponsor revenue, you can estimate registration costs.
#Mail registration forms about six to eight weeks before the registration deadline, but prepare to receive the majority of registrations just after the deadline date.
#As you are sending registration information, ask your speakers for a biographical sketch, any handouts they wish to use, and their AV requirements.
#Finalize the conference agenda as the registrations are coming in.
#As your registrations are coming in, prepare packets for your attendees.

Careful preparation means more time—and energy—to put out the inevitable last-minute fires!

==Site Selection==

Are your members clustered in one area? How close is your organization's location to the majority of members? What people resources do you have for the nitty-gritty of planning and working with the conference site?

What are your space requirements? You've already decided whether you need a church basement or a hotel; do you need multiple rooms for concurrent sessions? For exhibitors? For socializing?

==Tips for Site Selection==

#The number of people interested is the biggest factor in establishing the scope and location of your meeting.
#Hotel rates should be around $100.00 a night.
#Does the site you are considering have an indoor pool? An area where families can socialize?

For conferences in which your organization is expecting a smaller crowd, there are places the conference could be held that may be less costly than a hotel. One such venue could be faith-based or non-profit related organizations that have conference centers that are available for other organizations to use for a short period of time. [http://www.younglife.org/Camping/Pages/RetreatsAndConferenceUse.aspx Young Life] is an option for this. Furthermore, your organization may want to consider state parks, or university-owned meeting space or property, for example [https://www.bradwoods.org/facilities/meeting-spaces/ Bradford Woods].

==After the Conference==

*Send thank-you notes to all the volunteers, speakers, contributors, vendors, and other people who participated in the conference. Additional ways to show appreciation to conference speakers includes: giving the speakers a bag or t-shirt with the organization's logo, a plaque, or some other small gift such as gourmet popcorn.
*Send thank-you notes and evaluation forms to the attendees.
*Did you realize in hindsight that you should have done something differently? Write it down!

==Internal Links==
*[[Autopsies and Tissue Collection]]
*[[Best Practices]]
*[[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]]

Conferences, Workshops, and Meetings for Affected Individuals

2015-03-25T17:45:00Z

Advocacy Admin: /* Tips for Getting Funding */

Conferences, workshops, and meetings are effective ways to teach your membership about your organization's condition and to create and strengthen your members' sense of community. Creating these events involves two major tasks: determining the scope and objectives of your meeting, and doing the logistical planning for the event. You can read some examples of other conferences at our [[Setting Up A National Conference]] page.

==Determining the Scope and Objectives of Your Meeting==

Conferences include many sizes and types of events. They can be as simple as an afternoon session with a speaker followed by some social time, or as extensive as a lodgings-based multiday event with a mix of speakers and activities and with meals served on site. Consider these issues as you plan conferences:

*Your members' interests
*Your goals for serving your membership
*Costs
*Available resources

When creating a new conference, survey your members. Ask them what they want from a conference, how much time they would want to spend, how far they would be willing to travel. Ask them what they can afford, and get a sense of how many interested members would require financial assistance. Even if you know for certain that your members need a certain kind of conference or educational experience, the starting point should be what they want.

This is initial part of planning is where you can ask open-ended questions, such as "what time of year works best for your family?"

Tips for Date Selection

#Spring and fall meetings have good attendance. Families may travel during the summer, so offering the meeting as a vacation may have appeal. Winter storms can hinder travel.
#Off-season times (March to early April, mid-November) may offer better opportunities to negotiate travel and hotel rates.
#Consider holidays as you plan events—not just major holidays but feast days and other observances, depending on your members' affiliations. Holidays (such as Memorial Day, Independence Day, and Labor Day) can mean lower rates for hotels in business cities.
#Know when specialists that focus on your organization's condition go to their professional meetings. You may lose potential speakers if your conference coincides with meetings they must attend.

==Your Members' Interests==

Ask them what they want. This is their conference, and it cannot succeed unless it meets real needs. Some questions to consider: do they want a one-day conference or something longer? Do they want to meet on a weekend or weekday? Are there particular holidays that could coincide with this conference? Are there holiday periods you should avoid? What can they afford?

Answers to these questions will help you get a sense of how many people will actually come to a conference, a crucial starting point for planning location and activities.

==Your Goals for Serving Your Membership==

This is where you reconcile your sense of what your members need with what they want, and where you use what they want to create a curriculum for getting it to them. They may say their top need is to learn how to work for a cure for their children. This could translate into a conference in which they get talks about the current state of research from scientists along with workshops about informed consent and donating tissue.

==Costs and Scholarships==

Travel distances, lodging options, speaker costs, and supplies for the meeting will all figure into your final budget. It takes time to establish the details of this budget, but you'll need to start with a ballpark figure. As you consider what your families want and what your organization needs to share with them, you need to go beyond what families can afford and have a good sense of what your organization's costs will be. Consider name badges, signs for the conference site, packets for the members, registration forms, mailing costs, equipment rental, honoraria or gifts for your speakers, day care, etc.

Many organizations provide financial assistance to some of their members. To learn about some of the scholarship programs offered by other organizations, visit [[Scholarships for your participants/families/members]] and [[Setting Up A National Conference]].

Here is what one health advocate had to say about an organization's experience with conference funding and costs:

"We have had all our expenses covered for the past two conferences through sponsorships and low registration fees ($110 for the first family member, $90 for others; no fee for affected individuals or those under eight-years-old). We have a separate scholarship fund for needy families to attend and ask our donors to make a separate donation if they wish to help a family attend. We usually have enough to pay the registration fees and hotel fees for 2-3 nights for 7-10 families. We do not pay transportation. We go by the honor system. If they say they have a need and fill out the simple application form, then we try to help them. We give preference to first time attending families so if someone asks for a scholarship repeatedly I can simply say others that haven’t yet had a chance to attend have been chosen."

===Honorariums===
As for payment to speakers, groups are all over the place on this. Some pay none - though it is certainly just to compensate people for their time, it is hard to find funding for it. In some cases, groups fundraise for an event just for that expense.

For instance, PXE International, a very small organization (budget of ~$250K), gives an honorarium only when the speaker is critical to a meeting (a low vision specialist or plastic surgeon at a patient info meeting) and they can't find anyone else. They have paid anywhere between $100 to $500 for a workshop of a couple of hours.

Of course, top notch speakers charge a great deal - speaking fees for major speakers are in the tens of thousands and occasionally hundreds of thousands.

==Tips for Budgeting==

#Plan on about $1,000.00 per keynote speaker (travel, hotel, incidentals).
#You can negotiate almost any price when working with a hotel, especially if your attendance will be large.
#Plan on gratuities of about 25% for meals.
#You will always pay service taxes and may pay other taxes if your organization does not have state tax-exempt status.
#Don't forget conferences badges, printing and mailing costs, equipment rentals, gifts for speakers, and day care costs.

==Available Resources==

Consider in-kind and financial donations your organization can obtain. Is there a church that can offer space for your meeting? Are there manufacturers whose products your membership uses routinely? As with costs, you'll revisit resources as you do logistical planning, but a general sense of whom you can tap will help you scope your meeting effectively.

==Tips for Getting Funding==

#Exhibitor fees average $1,000.00 per booth.
#Give potential exhibitors about 6 months of lead time.
#If a company can't exhibit, ask for a donation. If you receive corporate sponsorships, make sure to provide them with a tax donation receipt.
#Do your members use specific products regularly, whether over-the-counter supplies or prescription medications? Ask the makers to exhibit or to provide a donation.
#If searching for a photographer or videographer to document your event, you may find success in reaching out to local colleges or universities. Students may be able to provide this service for little or no cost.

==Logistical Planning==

Logistical planning revisits the same issues as setting scope and objectives, and you will also get feedback from your members in this phase, but the questions you ask will come with a range of options, as opposed to be open-ended.

There are several major aspects to planning a conference:

*Site selection
*Date selection
*Budgeting
*Funding
*[[Speaker selection and management]]
*[[Childcare]]
*Managing the timeline
*Photography or videography at the event
*Post-event communication

==Use of Breakout Sessions==

It seems to me that giving a specific task is always good, but only if that task reflects the collective needs of the group. I would recommend that you use one of the following approaches:

:Survey attendees ahead of time to find out what they think are some of the barriers and then schedule focused working groups around those topics. Send out a background document ahead of time detailing the responses to the survey and giving people some information so that they’ll come to the meeting prepared OR plan talks for that morning so that they give people background on those issues.

:Organize the morning presentations as panels with a lot of discussion. Make one of the goals of the morning to identify major barriers. Then have a planning group (a few people from the morning presentations) meet to come up with specific breakout questions. Have those same individuals serve as facilitators for those groups (so that they clearly understand the context of why they were chosen).

:Make the breakouts longer and use the first 30 minutes or so to establish shared challenges. Then have the group pick one shared challenge to focus on. It is important for this type of breakout that you have someone facilitating and someone paying close attention to time, since you have to make a transition from general to specific.

Also, consider using activities to help determine priorities for your community. For instance, I organized one session at the conference (that received very positive feedback) for which I used the following format:

*One, overarching 10 minute presentation to give context
*Short 5 minute presentations (these could be examples of actual research projects that have failed or overall presentations of barriers)
*Break the group into small teams (those sitting around them, 4-5 people max) to come up with solutions in 30 minutes
*One person from each group presents those solutions
*Each individual votes on priorities (this was specific to funding for our session, but could also be used for organizational priorities or something similar).

==Tips for Managing the Timeline==

#Start planning your conference 12 to 14 months before the date.
#Book the site 12 to 14 months in advance.
#Book your speakers 9 to 12 months in advance, but don't print those conference agendas quite yet!
#From about six months before the date, start advertising heavily to your members. They will need constant reminders. Get them excited!
#Request exhibits or donations about six months ahead, and follow up closely. Once you know your sponsor revenue, you can estimate registration costs.
#Mail registration forms about six to eight weeks before the registration deadline, but prepare to receive the majority of registrations just after the deadline date.
#As you are sending registration information, ask your speakers for a biographical sketch, any handouts they wish to use, and their AV requirements.
#Finalize the conference agenda as the registrations are coming in.
#As your registrations are coming in, prepare packets for your attendees.

Careful preparation means more time—and energy—to put out the inevitable last-minute fires!

==Site Selection==

Are your members clustered in one area? How close is your organization's location to the majority of members? What people resources do you have for the nitty-gritty of planning and working with the conference site?

What are your space requirements? You've already decided whether you need a church basement or a hotel; do you need multiple rooms for concurrent sessions? For exhibitors? For socializing?

==Tips for Site Selection==

#The number of people interested is the biggest factor in establishing the scope and location of your meeting.
#Hotel rates should be around $100.00 a night.
#Does the site you are considering have an indoor pool? An area where families can socialize?

For conferences in which your organization is expecting a smaller crowd, there are places the conference could be held that may be less costly than a hotel. One such venue could be faith-based or non-profit related organizations that have conference centers that are available for other organizations to use for a short period of time. [http://www.younglife.org/Camping/Pages/RetreatsAndConferenceUse.aspx Young Life] is an option for this. Furthermore, your organization may want to consider state parks, or university-owned meeting space or property, for example [https://www.bradwoods.org/facilities/meeting-spaces/ Bradford Woods].

==After the Conference==

*Send thank-you notes to all the volunteers, speakers, contributors, vendors, and other people who participated in the conference. Additional ways to show appreciation to conference speakers includes: giving the speakers a bag or t-shirt with the organization's logo, a plaque, or some other small gift such as gourmet popcorn.
*Send thank-you notes and evaluation forms to the attendees.
*Did you realize in hindsight that you should have done something differently? Write it down!

==Internal Links==
*[[Autopsies and Tissue Collection]]
*[[Best Practices]]
*[[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]]

Conferences, Workshops, and Meetings for Affected Individuals

2015-03-25T17:41:54Z

Advocacy Admin: /* Logistical Planning */

Conferences, workshops, and meetings are effective ways to teach your membership about your organization's condition and to create and strengthen your members' sense of community. Creating these events involves two major tasks: determining the scope and objectives of your meeting, and doing the logistical planning for the event. You can read some examples of other conferences at our [[Setting Up A National Conference]] page.

==Determining the Scope and Objectives of Your Meeting==

Conferences include many sizes and types of events. They can be as simple as an afternoon session with a speaker followed by some social time, or as extensive as a lodgings-based multiday event with a mix of speakers and activities and with meals served on site. Consider these issues as you plan conferences:

*Your members' interests
*Your goals for serving your membership
*Costs
*Available resources

When creating a new conference, survey your members. Ask them what they want from a conference, how much time they would want to spend, how far they would be willing to travel. Ask them what they can afford, and get a sense of how many interested members would require financial assistance. Even if you know for certain that your members need a certain kind of conference or educational experience, the starting point should be what they want.

This is initial part of planning is where you can ask open-ended questions, such as "what time of year works best for your family?"

Tips for Date Selection

#Spring and fall meetings have good attendance. Families may travel during the summer, so offering the meeting as a vacation may have appeal. Winter storms can hinder travel.
#Off-season times (March to early April, mid-November) may offer better opportunities to negotiate travel and hotel rates.
#Consider holidays as you plan events—not just major holidays but feast days and other observances, depending on your members' affiliations. Holidays (such as Memorial Day, Independence Day, and Labor Day) can mean lower rates for hotels in business cities.
#Know when specialists that focus on your organization's condition go to their professional meetings. You may lose potential speakers if your conference coincides with meetings they must attend.

==Your Members' Interests==

Ask them what they want. This is their conference, and it cannot succeed unless it meets real needs. Some questions to consider: do they want a one-day conference or something longer? Do they want to meet on a weekend or weekday? Are there particular holidays that could coincide with this conference? Are there holiday periods you should avoid? What can they afford?

Answers to these questions will help you get a sense of how many people will actually come to a conference, a crucial starting point for planning location and activities.

==Your Goals for Serving Your Membership==

This is where you reconcile your sense of what your members need with what they want, and where you use what they want to create a curriculum for getting it to them. They may say their top need is to learn how to work for a cure for their children. This could translate into a conference in which they get talks about the current state of research from scientists along with workshops about informed consent and donating tissue.

==Costs and Scholarships==

Travel distances, lodging options, speaker costs, and supplies for the meeting will all figure into your final budget. It takes time to establish the details of this budget, but you'll need to start with a ballpark figure. As you consider what your families want and what your organization needs to share with them, you need to go beyond what families can afford and have a good sense of what your organization's costs will be. Consider name badges, signs for the conference site, packets for the members, registration forms, mailing costs, equipment rental, honoraria or gifts for your speakers, day care, etc.

Many organizations provide financial assistance to some of their members. To learn about some of the scholarship programs offered by other organizations, visit [[Scholarships for your participants/families/members]] and [[Setting Up A National Conference]].

Here is what one health advocate had to say about an organization's experience with conference funding and costs:

"We have had all our expenses covered for the past two conferences through sponsorships and low registration fees ($110 for the first family member, $90 for others; no fee for affected individuals or those under eight-years-old). We have a separate scholarship fund for needy families to attend and ask our donors to make a separate donation if they wish to help a family attend. We usually have enough to pay the registration fees and hotel fees for 2-3 nights for 7-10 families. We do not pay transportation. We go by the honor system. If they say they have a need and fill out the simple application form, then we try to help them. We give preference to first time attending families so if someone asks for a scholarship repeatedly I can simply say others that haven’t yet had a chance to attend have been chosen."

===Honorariums===
As for payment to speakers, groups are all over the place on this. Some pay none - though it is certainly just to compensate people for their time, it is hard to find funding for it. In some cases, groups fundraise for an event just for that expense.

For instance, PXE International, a very small organization (budget of ~$250K), gives an honorarium only when the speaker is critical to a meeting (a low vision specialist or plastic surgeon at a patient info meeting) and they can't find anyone else. They have paid anywhere between $100 to $500 for a workshop of a couple of hours.

Of course, top notch speakers charge a great deal - speaking fees for major speakers are in the tens of thousands and occasionally hundreds of thousands.

==Tips for Budgeting==

#Plan on about $1,000.00 per keynote speaker (travel, hotel, incidentals).
#You can negotiate almost any price when working with a hotel, especially if your attendance will be large.
#Plan on gratuities of about 25% for meals.
#You will always pay service taxes and may pay other taxes if your organization does not have state tax-exempt status.
#Don't forget conferences badges, printing and mailing costs, equipment rentals, gifts for speakers, and day care costs.

==Available Resources==

Consider in-kind and financial donations your organization can obtain. Is there a church that can offer space for your meeting? Are there manufacturers whose products your membership uses routinely? As with costs, you'll revisit resources as you do logistical planning, but a general sense of whom you can tap will help you scope your meeting effectively.

==Tips for Getting Funding==

#Exhibitor fees average $1,000.00 per booth.
#Give potential exhibitors about 6 months of lead time.
#If a company can't exhibit, ask for a donation. If you receive corporate sponsorships, make sure to provide them with a tax donation receipt.
#Do your members use specific products regularly, whether over-the-counter supplies or prescription medications? Ask the makers to exhibit or to provide a donation.

==Logistical Planning==

Logistical planning revisits the same issues as setting scope and objectives, and you will also get feedback from your members in this phase, but the questions you ask will come with a range of options, as opposed to be open-ended.

There are several major aspects to planning a conference:

*Site selection
*Date selection
*Budgeting
*Funding
*[[Speaker selection and management]]
*[[Childcare]]
*Managing the timeline
*Photography or videography at the event
*Post-event communication

==Use of Breakout Sessions==

It seems to me that giving a specific task is always good, but only if that task reflects the collective needs of the group. I would recommend that you use one of the following approaches:

:Survey attendees ahead of time to find out what they think are some of the barriers and then schedule focused working groups around those topics. Send out a background document ahead of time detailing the responses to the survey and giving people some information so that they’ll come to the meeting prepared OR plan talks for that morning so that they give people background on those issues.

:Organize the morning presentations as panels with a lot of discussion. Make one of the goals of the morning to identify major barriers. Then have a planning group (a few people from the morning presentations) meet to come up with specific breakout questions. Have those same individuals serve as facilitators for those groups (so that they clearly understand the context of why they were chosen).

:Make the breakouts longer and use the first 30 minutes or so to establish shared challenges. Then have the group pick one shared challenge to focus on. It is important for this type of breakout that you have someone facilitating and someone paying close attention to time, since you have to make a transition from general to specific.

Also, consider using activities to help determine priorities for your community. For instance, I organized one session at the conference (that received very positive feedback) for which I used the following format:

*One, overarching 10 minute presentation to give context
*Short 5 minute presentations (these could be examples of actual research projects that have failed or overall presentations of barriers)
*Break the group into small teams (those sitting around them, 4-5 people max) to come up with solutions in 30 minutes
*One person from each group presents those solutions
*Each individual votes on priorities (this was specific to funding for our session, but could also be used for organizational priorities or something similar).

==Tips for Managing the Timeline==

#Start planning your conference 12 to 14 months before the date.
#Book the site 12 to 14 months in advance.
#Book your speakers 9 to 12 months in advance, but don't print those conference agendas quite yet!
#From about six months before the date, start advertising heavily to your members. They will need constant reminders. Get them excited!
#Request exhibits or donations about six months ahead, and follow up closely. Once you know your sponsor revenue, you can estimate registration costs.
#Mail registration forms about six to eight weeks before the registration deadline, but prepare to receive the majority of registrations just after the deadline date.
#As you are sending registration information, ask your speakers for a biographical sketch, any handouts they wish to use, and their AV requirements.
#Finalize the conference agenda as the registrations are coming in.
#As your registrations are coming in, prepare packets for your attendees.

Careful preparation means more time—and energy—to put out the inevitable last-minute fires!

==Site Selection==

Are your members clustered in one area? How close is your organization's location to the majority of members? What people resources do you have for the nitty-gritty of planning and working with the conference site?

What are your space requirements? You've already decided whether you need a church basement or a hotel; do you need multiple rooms for concurrent sessions? For exhibitors? For socializing?

==Tips for Site Selection==

#The number of people interested is the biggest factor in establishing the scope and location of your meeting.
#Hotel rates should be around $100.00 a night.
#Does the site you are considering have an indoor pool? An area where families can socialize?

For conferences in which your organization is expecting a smaller crowd, there are places the conference could be held that may be less costly than a hotel. One such venue could be faith-based or non-profit related organizations that have conference centers that are available for other organizations to use for a short period of time. [http://www.younglife.org/Camping/Pages/RetreatsAndConferenceUse.aspx Young Life] is an option for this. Furthermore, your organization may want to consider state parks, or university-owned meeting space or property, for example [https://www.bradwoods.org/facilities/meeting-spaces/ Bradford Woods].

==After the Conference==

*Send thank-you notes to all the volunteers, speakers, contributors, vendors, and other people who participated in the conference. Additional ways to show appreciation to conference speakers includes: giving the speakers a bag or t-shirt with the organization's logo, a plaque, or some other small gift such as gourmet popcorn.
*Send thank-you notes and evaluation forms to the attendees.
*Did you realize in hindsight that you should have done something differently? Write it down!

==Internal Links==
*[[Autopsies and Tissue Collection]]
*[[Best Practices]]
*[[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]]

Financial and Summary Statement

2015-03-19T18:53:11Z

Advocacy Admin:

Nonprofits must issue several types of financial statements on an annual basis (corresponding with the organization's fiscal year):

*Statement of financial position (balance sheets)
*Statement of activities (income statement)
*Statement of cash flows

Nonprofits must also be able to provide information about expenses by functional classification (program services, supporting services) and often by natural classification (rent, salaries, telephone).

The following is an example of how one organization goes about this.

Jim Moore

AXYS

“Nonprofits must allocate expenses according to FASB categories (loosely described as: program, fundraising, and admin – or management and general). The following are some recommendations for how to go about this:

1. Create a timesheet that makes it easy. The timesheet itself will be a mess, because it has to itemize all the categories you wish to track, but Excel has a way with this stuff, so a nice Excel template makes a wonderful timesheet, and it does all of the math for you.

2. Do not “standardize” the allocations. One quick look by an auditor will reveal that the CEO is rubber-stamping a template timesheet, and that the data collected are meaningless.

3. Setting aside 5 minutes at the end of the day enables executives and department heads to estimate how they spent their days fairly accurately, and perhaps reflect on how they spend their time. There are tools for this sort of thing if you prefer. This one comes recommended: [https://www.toggl.com/ toggl]

4. If you use QuickBooks, align your timesheet coding with QuickBooks [http://support.quickbooks.intuit.com/support/pages/inproducthelp/core/qb2k12/contentpackage/Core/Classes/info_classes_to_track_segments.html classes]. Each program should have its own class that tracks revenues and expenses for that program. So, if you have a grant from the Child Welfare Foundation to fund public education, you could track everything related to that activity with a simple class such as: CWF-PE. If you have to draw from your general fund to pick-up slack for expenses the grant doesn’t cover, your bookkeeper can transfer general fund money into that class to make the books balance.

5. In QuickBooks payroll, your bookkeeper would setup “recurring transactions” for each employee that includes all possible expense categories. This way, the bookkeeper can process your timesheet verbatim according to how you’ve allocated your time without having to recreate this mess each time. Where the item is zero, just enter zero in the payroll entry and let QuickBooks do the math based on hourly rate.

6. Meanwhile, QuickBooks can also use the classes to track everything else related to each activity and parse it out so you can, at a moment’s notice, find out precisely how much everything actually costs...not just hard costs, but also labor.

7. If your organization accounts for in-kind (and you should), then allocate volunteer time to these classes as well.

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.”

==Annual Reports==

Annual reports have two major functions: to report your financial status and to give an overview of your organization's values and accomplishments. High-end annual reports from large corporations are publicity pieces, beautiful designs on high-quality paper with profiles of important individuals and projects that contributed to the company's success. Publicly traded companies make these reports available to all, while other organizations may limit the distribution of various parts of their annual overview and detail reporting.

As you plan end-of-year reports, consider your audience. You will most likely wish to reassure your membership that you are focusing on outcomes for their health and privacy, and reassure donors that their money is being spent wisely. An annual report can also generate interest in your organization on the part of individuals or companies with whom you hope to work. An annual report is a place to show who your organization is, demonstrate your fiscal responsibility, and celebrate your successes with stories and images of positive outcomes for your membership.

==Internal Links==
*[[Setting up Useful Systems|Tax and Finance: Setting up Useful Systems]]
*[[State-Specific Issues|Tax and Finance: State-Specific Issues]]
*[[Attaining 501(c)(3) Status (Not-For-Profit Determination)|Tax and Finance: Attaining 501(c)(3) Status (Not-For-Profit Determination)]]
*[[Accepting Donations|Tax and Finance: Accepting Donations]]
*[[Accountants|Tax and Finance: Accountants]]
*[[Audits|Tax and Finance: Audits]]

Financial and Summary Statement

2015-03-19T18:47:20Z

Advocacy Admin:

Nonprofits must issue several types of financial statements on an annual basis (corresponding with the organization's fiscal year):

*Statement of financial position (balance sheets)
*Statement of activities (income statement)
*Statement of cash flows

Nonprofits must also be able to provide information about expenses by functional classification (program services, supporting services) and often by natural classification (rent, salaries, telephone).

The following is an example of how one organization goes about this.

Jim Moore
AXYS

“Nonprofits must allocate expenses according to FASB categories (loosely described as: program, fundraising, and admin – or management and general). The following are some recommendations for how to go about this:

1. Create a timesheet that makes it easy. The timesheet itself will be a mess, because it has to itemize all the categories you wish to track, but Excel has a way with this stuff, so a nice Excel template makes a wonderful timesheet, and it does all of the math for you.
2. Do not “standardize” the allocations. One quick look by an auditor will reveal that the CEO is rubber-stamping a template timesheet, and that the data collected are meaningless.
3. Setting aside 5 minutes at the end of the day enables executives and department heads to estimate how they spent their days fairly accurately, and perhaps reflect on how they spend their time. There are tools for this sort of thing if you prefer. This one comes recommended: [https://www.toggl.com/ toggl]
4. If you use QuickBooks, align your timesheet coding with QuickBooks [http://support.quickbooks.intuit.com/support/pages/inproducthelp/core/qb2k12/contentpackage/Core/Classes/info_classes_to_track_segments.html classes]. Each program should have its own class that tracks revenues and expenses for that program. So, if you have a grant from the Child Welfare Foundation to fund public education, you could track everything related to that activity with a simple class such as: CWF-PE. If you have to draw from your general fund to pick-up slack for expenses the grant doesn’t cover, your bookkeeper can transfer general fund money into that class to make the books balance.
5. In QuickBooks payroll, your bookkeeper would setup “recurring transactions” for each employee that includes all possible expense categories. This way, the bookkeeper can process your timesheet verbatim according to how you’ve allocated your time without having to recreate this mess each time. Where the item is zero, just enter zero in the payroll entry and let QuickBooks do the math based on hourly rate.
6. Meanwhile, QuickBooks can also use the classes to track everything else related to each activity and parse it out so you can, at a moment’s notice, find out precisely how much everything actually costs...not just hard costs, but also labor.
7. If your organization accounts for in-kind (and you should), then allocate volunteer time to these classes as well.

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.”

==Annual Reports==

Annual reports have two major functions: to report your financial status and to give an overview of your organization's values and accomplishments. High-end annual reports from large corporations are publicity pieces, beautiful designs on high-quality paper with profiles of important individuals and projects that contributed to the company's success. Publicly traded companies make these reports available to all, while other organizations may limit the distribution of various parts of their annual overview and detail reporting.

As you plan end-of-year reports, consider your audience. You will most likely wish to reassure your membership that you are focusing on outcomes for their health and privacy, and reassure donors that their money is being spent wisely. An annual report can also generate interest in your organization on the part of individuals or companies with whom you hope to work. An annual report is a place to show who your organization is, demonstrate your fiscal responsibility, and celebrate your successes with stories and images of positive outcomes for your membership.

==Internal Links==
*[[Setting up Useful Systems|Tax and Finance: Setting up Useful Systems]]
*[[State-Specific Issues|Tax and Finance: State-Specific Issues]]
*[[Attaining 501(c)(3) Status (Not-For-Profit Determination)|Tax and Finance: Attaining 501(c)(3) Status (Not-For-Profit Determination)]]
*[[Accepting Donations|Tax and Finance: Accepting Donations]]
*[[Accountants|Tax and Finance: Accountants]]
*[[Audits|Tax and Finance: Audits]]

Fundraising

2015-02-23T21:59:14Z

Advocacy Admin: /* Questions and Answers for New Orgs */

Fundraising

2015-02-23T21:58:42Z

Advocacy Admin: /* Questions and Answers for New Orgs */

Publicity and General Media

2015-02-23T21:57:00Z

Advocacy Admin: /* 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. Although creating these short speeches can often be challenging, the Pepsi Refresh Project offers [http://listserv.galists.org/t/551661/213530/1467/0/ tips] on how to be both succinct and compelling.

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]]

Internet Services: Listserv Guidelines Netiquitte Help

2015-02-23T20:16:11Z

Advocacy Admin: /* Rules of Conduct */

'''Question'''

The Barth Syndrome Foundation has utilized a Listserv since 2001. We have used various platforms including the GA platform but since 2004 we have used a private vender. That said, early on we realized the importance of establishing some guidelines for making posts. We benchmarked other groups to establish guidelines. Initially we distributed them on a regular basis. However this resulted in a significant decrease in the number of posts being made.

'''Answer #1'''

I always post, immediately, reminding everyone that we can disagree. But we cannot attack each other. Then, I privately tell the offender that they can send me, privately, what they want to say and i will edit out the emotion, or they can chill. I turn their frustration, anger, and rage to me. I am very firm that they cannot contact their victim privately or I will have to do a removal. I also remind all persons that they can block any email address that offends them. This slows the list serve for a couple of days, but I get lots of private messages.

'''Answer #2'''

We have but two rules for our 15+ year old MLD Family Discussion List™ ... privacy and respect. Most behaviors and misbehaviors can be addressed under one of these two items.

And the primary aspect of respect we concern ourselves with is to support each other regardless of any personal decisions we or others make about the care of our/their loved ones - and we acknowledge that can be a challenge because faith, culture, ethnicity and so many other things (including some we never call out like ignorance, shortsightedness, and selfishness) play into those decisions. No matter what decision, choice, or perspective someone shares - we can always learn something from them and we can always love them ... or at least their loved one.

Over 15 years we have learned a few things about managing/shepherding our online community, and fortunately, we have only had to remove one person, about 12 years ago, for violating rule #2, respect.

First off, we removed ourselves from being list moms and tried to instill in the community that this is their resource, not ours. Occasionally we have to guide and remind folks that we all come from different cultures, experiences, socio-econimic classes, experiences, and backgrounds. We also occasionally remind folks that the list is here to help share experiences, ideas, compassion and support ... and that all of this comes from those who write on the list. If something is not being discussed or a perspective is not being shared then don't complain, write about what you feel. In doing this we effectively instill in the subscribers that their mom is not here - they have to take on some personal responsibility for the health of the community. And just like at a family reunion or a big Thanksgiving dinner - you can choose to sit next to someone or not ... and have a good time without regard to who is across the room. Email filters and the delete button are your choice to ignore anyone you wish.

We do not allow dominance by one person or opinion on a topic or over the community by gently encouraging others to participate by asking leading questions ... not so much by shutting down conversations, being list mom, or king of all knowledge ... rather by engaging others.

While we have the ability to moderate the list or a specific poster, we try to not do that as it puts us in the role of censor when we would really much rather be a guide. These days, we moderate individuals only when spam comes through via their account.

We do not archive messages ... we feel that the occasional repetitive nature of a live conversation is more current, accurate, engaging, and supportive. Many object to this initially but do get used to the ebb and flow of topics. And a plus for us ... we never need to censor/delete any posts.

And with regard to FaceBook an other communities families set up. We observe many of those and when a topic becomes less social and more disease specific we sometimes make a teaser answer but encourage the detailed discussion to occur over on the private MLD list where the advise will be disease specific. We gently left folks know that most FaceBook groups and timelines are transient (not everyone sees the messages because they roll off the timeline) and the communities are often open to those with other related (and unrelated) diseases so the information may not be appropriate for your specific disease. And sometimes a small group of one perspective vocal individuals drives these more public forums. There are cases where mixed disease support is valuable - questions about local resources, general therapy/mobility/resource questions, etc. It never helps to label a particular community gathering place bad ... just let them go their course and take the high road.

'''Answer #3'''

My name is Linda Hageman, RN reading your post I easily with what you are saying. I am the Executive Director of American Multiple Endocrine Neoplasia Support; www.amensupport.org. Last week was actually a very difficult week as I have been blasted by individuals that are not knowledgeable about Multiple Endocrine Neoplasia (MEN). I too had to post rules on our FB Group and our website unfortunately we also noticed noticed quite a significant decrease of individuals using the FB Grp. I was prepared for this as I had a talk with another colleague that recently had to make up rules for conduct.

I am attaching the set of rules that we adopted. I was initially wondering if the patrons of our FB Group site would return and I have found that they have. Having the rules gives you more of a platform when you have to delete or block someone. Many are afraid to block anyone; however once I got a few of the negative people, which were breaking the rules constantly I noticed a much nicer, kinder group of individuals on the FB Group. Believe me I did not want to block any individuals but once I did it was truly amazing how much more supportive and educational the postings became.

=='''Rules of Conduct'''==

We here at Hageman Foundation 501(c)(3), IRS approved nonprofit, doing business as American Multiple Endocrine Neoplasia Support rules of conduct on Facebook and our website www.AMENsupport.org

If you have a medical emergency, please call 911. Our moderators are happy to answer general questions regarding MEN. However online forums should NEVER be used as a substitute for an Emergency Room Visit, Physicians consultation or office visit for medical care or medical advice. Always talk to your physician before making changes to your treatment plan.
Giving Medical Advice is prohibited. Please feel free to relate your personal experiences and any general information you would like to include to your post, BUT do not give medical advice.
Please do not post links unless they come from a well-established, peer-reviewed medical journal (NIH, Endocrinology, and New England Journal of Medicine). All links posted must provide guided by “evidence-based medicine”. Inappropriate links will be removed, and repeat offenders may be subject to suspension/banning.

While Posters may discuss complementary approaches that are practiced in addition to conventional treatments such as Yoga, Stress Reduction, Balanced Diet, and Meditation. Our forum prohibits discussions that promote “alternative” therapies designed to replace conventional medical treatment.

Debate the Topic Not The Person. Please be respectful and civil in stating your position, and do not use derogatory language or otherwise personally attack another poster, moderator, or Administrator. This will result in immediate suspension or banning from the site.
Uses of Physicians Names, or Medical Centers are not to be used to post a negative comment.
Spamming or Product advertising is strictly prohibited.

If you use the Private Message option on FaceBook, please be aware if you are providing inappropriate medical advice, or abusing a fellow poster, the issue will be investigated. Based on documented findings, abusers may be banned from the forum, suspended, or warned.
Web forum facilitators have the ability to either edit or delete posts that violate the above guidelines and suspend or ban individuals.

Questions or problems? Not sure if link is OK to post? Need to report a problem with another user please contact me at Linda@hagemanfoundation.org

Taking Credit Cards on the Web

2015-02-23T20:15:32Z

Advocacy Admin:

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], [http://checkout.google.com/ Google Checkout], Groundspring.org, 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 http://www.webtrix.net/, 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]]

Helping Your Membership Help Your Group

2015-02-23T20:15:00Z

Advocacy Admin:

One of the greatest resources an organization has is its membership. This membership can be defined in a number of ways, and it is probably a good idea to examine membership as both a goal and a resource.

Most of the time, when new organizations think about membership, they think about building it. Getting is a key activity of your work. Your members are also a resource and not just for the donations they might contribute. They are a pool from which to draw volunteers, expertise, and networking connections that might be critical to advancing your mission. In addition, your members can participate in studies on your condition. A large collection of affected individuals can be a tremendous asset for an organization seeking to initiate or promote research. Individuals can donate samples of blood and tissue, and they can share information, such as how the condition manifests itself and progresses, therefore conveying information about the natural history and/or epidemiology of the condition.

How will you define membership? Some organizations allow only affected individuals to be members, others extend that to include family members, and still others include anyone who wishes to be a part of the organization.

Consider how you will structure membership. Some organizations charge a membership fee and others do not. Both methods appear to be useful. Organizations that charge a membership fee describe members' sense that they are investing in the organization. In addition, they believe it builds a commitment to the organization. The revenue may help to offset costs of a newsletter or website. However, many organizations find that the amount received by membership fees does not do much in the way of offsetting these costs. Some organizations have a flat fee of $25 or $50 annually. Other organizations have a sliding scale. Almost all organizations allow people who cannot afford the membership fee to join for free, or on a scholarship. For legal purposes, the membership should be defined in the event that a vote of the membership is required, by some states, for legally changing the name of the organization, for example.

Other organizations charge no fee. Their rationale for this is founded on a number of considerations. Some have a philosophy that they should not charge for help and information. Some reason that as the value of the organization is understood, the members will annually donate more than a membership fee of $25 or $50. A number of organizations report that this seems to be true. If members pay an annual fee, they may be less inclined to make a more substantial donation, believing their duty is done.

Genetic Alliance recently shifted from a fee-based membership to a free membership. It was not possible to be as inclusive as we wanted to be without offering free membership. It is our hope that those who can afford it will pay something, and those who cannot will have their membership and services sustained through the support of others.

In addition, a number of organizations appreciate that a large membership can be important for research, for better understanding of the condition, and for important campaigns such as lobbying.

The primary activity of any organization should be establishing and maintaining contacts of all kinds, everywhere. Networking is the most vital activity you can engage in it will be a key to many doors. At a neighborhood barbeque, at a play, or at the gas station, you might meet someone who knows someone or something that can help you and your organization. Always have business cards handy, even if they are home-printed.

It is important to understand an individual's motivation for joining your organization. Understanding this will help you to understand the needs of your constituency. We'll get into that in the "sustaining" section. People join advocacy organizations for a number of reasons primarily for information, support, or to participate in research.

Individuals seeking information will look for you, but they won't do your work for you. You need to ensure that information about your organization is readily available. Individuals seeking support might not aggressively look for you. Once again, you need to be available to them perhaps less subtly than for individuals seeking information.

Individuals seeking support can find out about your organization from other people who support their health care providers, mental health professionals, or caregiver individuals in their lives. Connections with those providers can be used to support educational functions of your organization. Make your target audience broad. Family and friends of affected individuals will contact you, in addition to health care providers and members of the media. You want to be ready to give information to these people as well.

You can reach out to potential members with the aid of traditional media outlets, contact with professional organizations, community organizations, electronic media, and umbrella groups that support advocacy organizations. Recruiting and sustaining membership has many dimensions. Read on for details about building the contacts you need for membership and communicating with your members to keep them interested, committed, and motivated.

There are many different ways to define “membership”; the goal is, to figure out what works best for your organization.

Dean Suhr

MLD Foundation

“501(c)(3) is a tax/operational designation made by the IRS on a charitable organization (company) formed under a specific state charter. Members are allowed in charitable organizations with 501(c)(3) designations - this is the historical model. They are not "owners" or "shareholders" (there is no such thing with a non-profit), just (typically) Members paying dues with rights as specified in the Bylaws.

Even if your organization does not include membership in its Bylaws you can have members paying dues or not paying dues (lower case M with no Bylaw inspired rights - just what benefits you give them as a matter of practice). In our case we don't call anyone a "member" and don't ask for any annual donation, but we do ask for a bit of disease and family information before we put them into the inner circle of family connectivity. So in practice, not by law, we have a sort of member - we just don't call it that.

Traditionally Members paid an annual fee, received some special status, access, and sometimes voting privileges for organization officers.

I think the membership question boils down to two items/questions:
1) Do you need the membership dues to sustain your organization? (A financial question)
2) Does membership provide enough benefit to the members for them to make the effort/expense to become a member? (An operational/organizational/mission question)

In short, is membership a financial issue or an access/service issue?

We have always believed that the families are those we serve and in our very rare disease they should not be our source of revenues. We do not want any hurdles preventing families connecting with us to be served. And frankly, the math never worked for us anyhow ... our community is too small and the potential negative exclusionary tradeoffs for a few thousand dollars of income didn't make any sense, i.e. there was no leverage in having membership dues.

And of course today, in the Internet age, families will gather to support each other and find the information another way if we are not forthcoming, open, welcoming, and including.

I think the dues paying model always has been a tough one for rare diseases and in the Internet age it's not sustainable. It might work better for chronic conditions and larger budget organizations where there is higher leverage with lower participation, but even then, it depends on your mission and the value to the potential members. Personally, I think it's a dying model in most cases. And where we do see it is "successful" I suspect the low dollar level members are enticed with "gifts" that reduce your net income and the higher-level donors, if you nurtured relationships with them, would be donors anyhow.”

==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]]
*[[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

2015-02-23T20:13:51Z

Advocacy Admin: /* Donor Relationship */

Insurance and Policies

2015-02-23T20:10:36Z

Advocacy Admin: /* Liability Insurance */

When starting an organization, there are many policies to craft and organizational decisions to be made such as what types of insurance to carry. On this page, you will find anecdotes and tips from others who have been in your situation.

====Liability Insurance====

*Our liability insurance is through a group and specific for nonprofits. You can access their website [http://www.musilli.biz/ here] which also includes other helpful links.

*Our organization just received a 501(c)(3) status in March and we elected to purchase Directors and Officers insurance immediately. However, our insurance agent did not think it was necessary until we actually began spending the organization’s money. As it turned out we immediately received a donation to fund a research project so in our case we were glad we took the route we did. Our policy is through Traveler’s Insurance and it cost about $900 a year.

====Examples of Liability Insurance Companies for Non-Profits====
There are many places where non-profits can find insurance:
*[http://www.niac.org/ Nonprofits' Insurance Alliance of California] - One of the major liability insurance providers for California-based non-profits

====Do you know of volunteer service efforts being cut or limited due to insurance demands?====
Are you aware of any self-help group that has been hurt or possibly destroyed by insurance demands being placed on their community volunteer efforts? While traditional volunteer service programs are uneffected because hospitals and agencies provide insurance for their volunteers, we sense an increasing number of volunteer-run self-help support groups are now being blocked from using public, government or church/temple meeting room space, or doing volunteer work at such sites because they are being told they must produce proof of their having their own insurance coverage.

If you know of instances where volunteer service efforts (including running self-help support groups) are being cut back or eliminated because of insurance or related demands, kindly consider adding your story about how insurance demands are harming volunteer intiatives at: http://www.energizeinc.com/hot/2010/10aug.html
From www. selfhelpgroups.org

Building a Website

2015-02-23T20:01:14Z

Advocacy Admin: /* 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.kineticsolutionsservices.com/
*http://www.novelprojects.com/
*http://www.studio162.com

==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 [http://www.access-board.gov/sec508/e-learning.htm/Section 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.

 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

2015-02-23T20:00:09Z

Advocacy Admin: /* 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.kineticsolutionsservices.com/
*http://www.novelprojects.com/
*http://www.studio162.com

==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 [http://www.access-board.gov/sec508/e-learning.htm/Section 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.

 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]]

Clinician- and Researcher-Focused Materials

2015-02-12T19:29:51Z

Advocacy Admin: /* Working with Existing Material */

==Producing Material==

Writing an article for a peer-reviewed scientific or medical journal can call attention to your organization in an important way. If you feel that your organization has made some significant strides or contributions to some area of research or services, then submit a paper to a relevant journal. Collaborate with a researcher or clinician. Be creative.

While you may not able to participate in the creation of an article reporting scientific results, journals also publish editorials or informative articles, such as the effectiveness of advocacy, novel uses of resources, or implications of health care policy for your organization's condition. In addition, they publish letters to the editor.

==Working with Existing Material==

Many organizations find it helpful to have some type of access to scientific material on the condition they represent. Having the research findings alongside the clinical and advocacy information provides a comprehensive view of the condition, and is especially helpful for clinicians and researchers. There are, however, limitations on the reproduction of scientific publications, as they are often copyrighted academic property. Usually, the abstract (summary) of the research is all you can offer without express permission, and access to full articles can often require payment. It is important to weigh the costs and benefits before providing this sort of information.

*One of the simplest and fastest ways of providing research information is to post the abstract along with a link to another site where the full text is available (though there might be either a subscription necessary or a one time access fee). Always remember to include the proper scientific citation for the articles!

*Getting permission to offer full articles can be made easier if you have a private forum through which to share it, instead of posting it in a completely public domain.

*Instructing your members on how to obtain articles for themselves is another option. If the proper citation is provided, patients can take that information to their doctor, who can access it, and it can be reviewed that way. Many hospitals and clinics have medical libraries that may also have the article available to read.

*[http://www.rarediseases.org/ NORD] is an organization that provides research articles for a nominal processing fee.

The following is an example of one organization's approach on how to increase the depth of knowledge for the condition they represent.

Geraldine Bliss

Phelan-McDermid Syndrome Foundation

“One of Phelan-McDermid Syndrome Foundation’s goals is to increase physician’s knowledge about how to take care of patients with Phelan-McDermid Syndrome (PMS). Actually, the real goal is to change physician behavior, so patients receive appropriate care.

I’m honestly not sure if CME’s are the best way to accomplish this goal. I’ve gotten mixed opinions. Perhaps we could meet the goal equally well by developing a place either on our website or somewhere else that physicians could find easily digestible written content. It seems to me that “easy to find” and “easily digestible” are going to be very important, if we truly expect to change physician behavior.

"Easily digestible” might translate into an infographic showing the major areas of health challenges in PMS. This would give a busy pediatrician a quick overview of the conditions that need to be monitored and an idea of what kinds of referrals will need to be made. For physicians who need to learn more, perhaps they could click on different areas of the infographic to read detailed information, including recent practice parameters. It would be nice if we could offer CME’s to physicians who read all the content and pass a test, but I don’t know how important it really is.

Below are a few of the comments from the physician-parents I surveyed about the value of a CME course:

• I completely agree with having an information page easily accessible to physicians who want to pursue. I would make it very user friendly- start with basic information and links to pursue more details, research, etc. I don't think CME credits are essential- most of us get enough from our own specialty-- but maybe primary care docs would want something different. Again- I would focus on easy accessibility- simple format and links or contact information for more details.

• I personally think a CME product would be a tough sell to get a regular physician to do. We have never had difficulty getting the appropriate tests ordered for our daughter. Obviously being docs it is easier for us to get what we want. I do all my CME either at conferences or on web through my journals. I haven't done an outside course in years. Routine CME's are very easy to get now and often are supposed to be specialty specific. I do like the idea of a web based information page for some doctors who want to learn more. I do think it matters more who the doctor is (caring, inquisitive) rather than whether or not CME is offered. An information page that gives some informative and some websites might allow the doctor to take something home with them, rather than expecting the doctor to remember a website.

• My experience with my son’s physicians and neurologist has been frustrating. I have provided them with reprints about PMS, but I am fairly sure that they were either too busy or not interested enough to read them. I seriously doubt that they would actually watch a Webinar.”

==Internal Links==
*[[Articles, Letters, and Other Media for Lay Publication]]
*[[Brochures and Fact Sheets]]
*[[Family Health History]]
*[[Newsletters and Bulletins]]
*[[Press Kits]]
*[[Publisher Recommendations]]
*[[Starting Points for Planning Materials]]

Disease Advocacy Organization (DAO) Manual

2015-02-11T16:52:52Z

Advocacy Admin: /* Pre-Outreach Efforts */

''This is an unfinished page. Please check back later.''

An organization's guide to the Platform for Engaging Everyone Responsibly. Read on to learn how to set up your PEER portal.

[[File:dao-manual.png|200px|thumb|400px|right|DAO-Flowchart]]
==Initial Consultation with the PEER Team==

'''^Rename?'''

Having a clear direction for your project is an essential first step in developing your PEER portal. Here we'll tell you a bit more about why we've created PEER ([[Disease_Advocacy_Organization_(DAO)_Manual#About_PEER|About PEER]]), and assign some activities to help you start planning for your project ([[Disease_Advocacy_Organization_(DAO)_Manual#Expectations|Expectations]]). Please read this content ''before'' your initial consultation with the PEER Team. Then, following this meeting, you will start on portal development. 

===About PEER===

PEER creators Genetic Alliance and Private Access designed PEER with a central question in mind: how can we help you and your community to transform health? This means that PEER has been designed with the needs of communities in mind. How do we create a safe space to share health information or other sensitive data? [[File:Core-Registry-Components.png|upright=2.0|thumb|right|How do the components of PEER compare to those of typical registries?]] How do we respect diverse opinions about data sharing within our communities? How do we engage in research with our communities over time, yet not overwhelm our participants with consent after consent? With PEER, we hope you'll be able to answer these questions and more.

In many ways, PEER is similar to other registry platforms. It has the same core features: a tool for data entry, a database of deidentified data, and a query feature that allows for inquiry and analysis within said database. However, whereas access to data in other registries is dependent on the privacy and access policy of ''the registry owner'', to which participants must consent in advance, in PEER access to data is dependent on privacy and access preferences chosen ''by the participants''. Participants even choose privacy and access preferences for their own contact information, which is stored in PEER separately from their health data.

Participants manage privacy and access preferences using their Privacy Dashboard, which empowers each participant, or person legally authorized to act on his or her behalf, to indicate who constitutes an authorized user of the participant’s information, and in what form. Potential authorized users include disease advocacy organizations, researchers, research consortiums and data analysis platforms, while usage forms comes in three types: 'Discover My Anonymous Information', 'Receive My Contact Information', and 'Export My Anonymous Information'. Settings for 'Discover' control who can locate a participant's deidentified data, while settings for 'Contact Information' control who can access to a participant's contact information. Settings for 'Export' control who can export deidentified data from the PEER system. Across each user and for each usage form, participants have the option to permit access, decline access, or wait for more information before deciding. [[File:Privacy-Dashboard.png|350px|thumb|left|'''The Privacy Dashboard.''' Participants choose who can and cannot access their data, and for what purpose, in a granular and dynamic consent model.]] And of course, participants can change these preferences over time.

PEER seeks to engage participants in other ways, as well, by providing each user community with a unique experience of the system - something important in a cross-condition registry. Each PEER portal has community 'guides', identified by the portal organizations, who are knowledgeable about the portal's privacy and access preferences. Guides offers suggestions for these preferences based on their perspectives regarding privacy, and participants can choose their own preferences, or choose to educate themselves about possible alternative selections. Each PEER portal also works to engage participants during data collection. Portals include custom surveys designed by organizations with community input. While these surveys are built using the PEER questions library, a set of common data elements built using validated medical instruments, organizations can also use the PEER Survey Application (PSA) to write disease- or condition-specific questions on topics relevant to their target communities. Participants take these custom surveys within a 'gamified' interface, where each question answered shows how the participant's response compares to responses from others in their community. Upon finishing these surveys participants can then continue to answer gamified questions on general medical health, which exist across PEER's cross-condition system. Participants can also return to update surveys, as many fields are longitudinal, or to complete new surveys provided by organizations and researchers.

From start to finish, PEER is about its participants and the role those participants have to play in improving health. We look forward to helping you to bring this research tool to your community. 

===Expectations===

'''^Rename?'''

Your PEER portal will be unique to your organization and target communities. It is up to you to both define the direction for your PEER project, and develop your project content. If you have not already, we ask that you complete the following activities with your organization before your initial consultation with the PEER Team. 

====Set Preliminary Goals====
Define your project.
*'''Finalize your project focus.''' Ask: What is the end goal for your project? What do you want to learn, and what research do you hope to conduct? Who do you want to reach?
*'''Set participation goals for your project.''' Ask: What are your quarterly participation goals? On a 'big picture' level, what will you do to meet them? Will this project require expanding your reach? 

====Consult With Your Community====

Incorporate your community's perspective on your project.

*'''Reach out.''' Contact five to ten stakeholder individuals in your target communities, with whom you have an existing relationship. Tell them about your project, and ask them to meet with you to share their perspectives.
*'''Engage'''. Schedule a call or in-person meeting with your stakeholders, and start a conversation. You will use this conversation to refine your own project goals, which you defined in the [[Disease_Advocacy_Organization_(DAO)_Manual#Set_Goals|Set Goals]] activity, to help you plan future outreach and engagement activities, and even to assist you in choosing topics for your survey. Suggested Questions: What do you want to learn from this project? What do you want to tell researchers? What do you stand to gain from this project? How would you tell our community about this project? 

====Review Timelines & Responsibilities====

Each PEER project consists of five general components, which will be discussed in detail later on in this manual. Now that you've finalized the direction for your project, read over the following components and simultaneously review the timeline provided to you (instructions for accessing this available [[Disease_Advocacy_Organization_(DAO)_Manual#timeline|here]]). How will this timeline impact your goals?

*'''''The portal.''''' Your community's unique entrance to the PEER database is known as your PEER portal. It will house both your community guide content and your surveys. You will be responsible for designing your portal - from selecting portal color scheme, to crafting portal messaging, to choosing portal-specific privacy options - and for implementing your portal on your website.
*'''''The guides.''''' Guides are trusted community members who act as the face of your portal to participants, and simultaneously assist participants in navigating the privacy settings and choosing privacy options. Each guide will create several content pieces for this purpose, including videos, biographies, and sample privacy settings. You will be responsible for selecting these guides, and for assisting your guides in developing their content.
*'''''The survey.''''' PEER is committed to helping participants share data on their terms, and to doing so in a way that makes that data as useful as possible for researchers. We have developed a library of CDE Survey Segments on a variety of health topics, each consisting of multiple common data elements (CDEs). Each segment consists of validated health survey questions that have been standardized across the PEER platform. You will develop your survey from this library. Depending on the content areas you, your medical advisors, and your community wish to address, you may also develop new segments that contain questions specific to your organization's needs.
*'''''The outreach plan.''''' Community engagement is an essential part of your PEER project, both as you engage with portions of your community to develop the content described above, ''and'' as you prepare to launch your portal to the community as a whole. You will be responsible for developing and implementing an outreach plan for pre-launch activities (preparing your community for launch), launch activities (directing your community to your portal and survey directly following launch), and post-launch activities (ongoing outreach to bring new visitors to your portal, or to re-engage with current participants).
*'''''The IRB application.''''' The PEER system works with communities to foster and promote research, and as a research tool that administers surveys and collects information, PEER and its projects require IRB approval. You will apply to the Genetic Alliance IRB for approval, once you have finished developing your survey and outreach plan. 

====Assign Project Roles====

Decide who in your organization will be responsible for seeing these pieces through. You will need a point person for each of the five components introduced above: the portal, the guides, the survey, the outreach plan and the IRB Application. Individual components need not be assigned to separate individuals - you can also divide components up between multiple individuals, or assign multiple components to one individual. However, whatever you decide, is essential that you let the PEER Team know during the initial consultation. 

===Setting Up The PEER Portal===

===Timeline===

Smartsheet? Excel?

==Pre-Launch Outreach Efforts==

'''Katherine - move Renee content'''

===Developing Your Outreach Plan===

===Implementing Your Outreach Plan: Pre-Launch Activities===

==PEER Portal Design Decisions==

To be updated...
===Content and User Interface(UI)===

'''Katherine - wait for new system?'''

===Videos & Guides Development===

'''Tanya'''

==Survey Questions and Development==

'''Wayne'''

===Question Formatting===

'''PEER Question Breakdown'''

[[File:6a.jpg|577px|thumb|center|PEER Questions Layout]]

[[File:6b.jpg|504px|thumb|center|Detailed: View All Entries]]

'''PEER Info Panel'''

DAO Challenge: We want our users to be as informed as possible throughout the survey experience

PEER Response: '''''Info Panel''''' - introduce a new section, guide along, give info throughout, or conclude the survey.
*Add Response '''Info Panel'''
[[File:7a.jpg|378px|thumb|center]]

*PEER View
[[File:7b.jpg|646px|thumb|center]]

'''Outcome:''' the user is well-informed throughout, and the survey is intuitive.

*You can also use '''Info Panel''' to '''End Survey''' which will hide the Continue button and stop the survey.
[[File:8a.jpg|456px|thumb|center]]

*PEER View
[[File:8b.jpg|676px|thumb|center|PEER View]]

===Using the PEER Questions Manager===

'''Wayne'''

===Editing Survey Questions===

'''Wayne'''

===IRB Application Process===

Each organization must '''complete their outreach plan before beginning the IRB application.''' If the outreach plan changes, the organization must reapply for IRB approval

Follow these Instructions and consult Genetic Alliance for a copy of the '''Application to Conduct Research with Human Participants'''
*Read the Platform for Engaging Everyone Responsibly Western IRB Application
*Ask Genetic Alliance to clarify any issues
*Read the Application to Conduct Research with Human Participants
*Complete the NIH or other [https://phrp.nihtraining.com/users/login.php|Human Participant Protections] training
*Create your research plan:
*#Survey instrument beginning with Common Data Elements already in your REDCap account (or on the data dictionary spreadsheet we exported for you).
*#Outreach plan
*#Risk mitigation plan (how will you protect privacy and confidentiality at your site, in addition to the technology of PEER)
*Create or update your '''NIH style biosketch''' (you may use other formats, but you will need an NIH style biosketch if you are a co-PI on NIH or PCORI applications in the future).

[[File:Biosketch.jpg|600px|thumb|center|Biosketch]]

*Fill out the Application to Conduct Research with Human Participants
*Create your protocol number. Use four distinctive letters and start with 001. Subsequent protocols will be 002, 003…
* DO NOT remove or alter sections of the form that may not be applicable to your study (i.e. do not submit a protocol application with section III deleted if your study is not funded). The document must be provided to the IRB intact. If a section is not applicable to the research, please put “N/A” in that answer section.
*Attach a list of Investigators and study personnel as an Appendix. Include NIH style biosketch (new format) for all investigators.
*Before submitting the application, delete all highlighted sections

What requires a new IRB application?
#A new survey
#A new recruitment strategy in which materials need to be approved
#Substantive changes to existing recruitment materials or survey (it’s best to date-stamp your current ones and send any revised one for approval)

===Setting Up User Support System (Customer Support)===

'''Tanya'''

==Selected Audience Survey Testing==

After implementing your survey using PEER Admin, you will go to test the survey inside of your PEER Portal. The following section provides a step-by-step overview of this process.

You will complete testing in two phases. Phase I Testing, which takes place within your organization prior to preparing for portal launch, will enable you to identify and address any content errors in your survey, as well as general system errors. Phase II Testing, which takes place with members of your community directly before launch, will allow you to incorporate real user feedback before launching your portal.

Please note that testing your survey is an iterative process of finding items to change and fixing them. Depending on the length of your survey and the number of changes that need to be made after the initial pass, testing and incorporating feedback may take some time. On average, from making contact with testers to implementing changes, testing takes three weeks total. This does not include time in between phases. 

===Checkpoint: Before Starting Phase I Testing===

You must have... 
*'''Received IRB approval''' for your project.
*'''Implemented your finalized survey content''', including PEER Common Data Instruments and your own organization's questions, using the PEER Questions Manager.
*'''Finalized the future location of your PEER Portal''', and entered this information into PEER Admin. Remember, you need two different locations on your website for your demo portal and your live portal. Your demo portal, which is an exact replica of your live portal, allows you to test and view your portal without interfering with data collection.
*'''Completed portal customization''' within PEER Admin. You should have entered guide information, and chosen your PEER color scheme.
*'''Installed your demo PEER Portal''' by inserting your demo portal code (available following portal customization) on your demo webpage.
*'''Assigned a “Point Person” within your organization''' to liaise with the PEER Team throughout the testing process. When you are ready to start testing, it is up to your Point Person to let the PEER Team know! 

===Phase I Testing===

After completing the checklist items above, you are ready to start Phase I Testing. Phase I Testing will help you to identify possible errors in your survey, such as branching errors or grammatical errors. This phase of testing is conducted entirely within your demo portal, with the assistance of members of your staff or trusted partners.

To get started, have your organization's Point Person contact the PEER Team and tell us that you are ready to begin Phase I Testing. We will provide your point person with the required documentation, including... 

*Your '''Tester Information Sheet'''. This is where your Point Person will keep track of outreach to your testers, as well as information about your testers' roles when taking the survey. You will notice that there are two tabs in this sheet. For now, ''only'' use the 'Phase I' tab.

*Your '''Phase I Testing Feedback Form'''. This is where your testers will submit feedback.

*Your '''Phase I Testing Feedback SmartSheet'''. This is where your Point Person will manage and respond to feedback.

*Your '''Phase I Testing Instructions'''. Your Point Person will customize these instructions and provide them to your testers.

*Sample tester communications, including an invitation email. Your Point Person may use these templates to assist him or her in contacting and communicating with your testers. 

Once you've received these documents follow the instructions provided below to begin. From start to finish Phase I Testing should take you about two weeks, although this may change depending on the magnitude of the edits. Please consult the provided timeline, the '''Phase I Testing Timeline''', as you progress through the instructions. 

====Phase I Point Person Instructions====

#Choose and invite six people, including yourself, to test the demo portal survey. Keep track of outreach to these individuals using your '''Tester Information Sheet'''. Plan to invite these individuals ''a week before'' you wish to begin testing. They should be individuals who have a sense of your condition or disease, and are comfortable with technology in general. Together, you are all the "testers". If you wish, you may use the template invitation email provided to you. 
#Make sure you can access the documentation spreadsheets that we have assigned to you: your '''Phase I Testing Feedback Form''' and your '''Phase I Testing Feedback SmartSheet'''. If you cannot, alert the PEER Team. Once you have ascertained that you can access these sheets, take some time to familiarize yourself with the '''Phase I Testing Feedback SmartSheet'''. You will use this sheet to manage testers' feedback, and keep a record of who on your staff has been assigned to resolve which feedback items. If you like, you can give your staff access to the SmartSheet, as well. 
#Assign each of the testers a "role" for testing the survey. As you saw during the process of building your survey, the survey is designed to capture information either from individuals who are answering for themselves, or from individuals who are answering for another person. Different roles reflect this distinction. The minimum number of tester roles is listed below, but depending on the choices you made when designing your survey there may be additional roles to consider (for instance, individuals affected with a condition versus individuals who are carriers for a condition). If this is the case, you may need to assign multiple roles to your testers, as it's important to test the entirety of your survey. Be sure to note who will receive which roles using your '''Tester Information Sheet'''. Note that you may also want to assign Internet browsers with roles, to ensure that your survey is tested across as many platforms as possible. For instance, the tester answering for an affected male answering as himself might test the survey on Safari, while the tester answering for an affected female answering for herself might test the survey on Google Chrome. If you choose to assign browsers (recommended), please make note of this in the '''Tester Information Sheet'''. '''''Survey Roles''''' 
#*An affected male, answering for himself
#*An affected female, answering for herself
#*Someone with the legal right (caregiver, assistant, relative, friend…) to answer for an affected male who is decisionally impaired
#*Someone with the legal right (caregiver, assistant, relative, friend…) to answer for an affected female who is decisionally impaired
#*Someone with the legal right to answer, responding for a deceased male
#*Someone with the legal right to answer, responding for a deceased female
#*Any additional roles that you assign 
#As soon as you can, send each confirmed tester an instructions email (see templates provided to you) containing the '''Phase I Tester Instructions''' which we have provided to you. Be sure that you have reviewed these instructions yourself, and customized them for your condition or disease. Within 2-3 days of receiving your email, each of the testers should… 
#*Read the '''Phase I Testing Instructions''' you provided.
#*Go to the demo URL.
#*Create an account in the role or roles he or she has been assigned. Depending on their roles, testers may need to make additional profiles within their accounts to test the survey.
#*Test by proceeding as though he or she were the person in the role affected by the condition or disease.
#*Record any issues using the documentation we have provided. Testers will submit feedback using the '''Phase I Testing Feedback Form'''. For a detailed list of items that testers should look out for during this process, please see the '''Phase I Testing Instructions'''.
#*Email you to confirm that he or she has completed testing, and to tell you how long it took him or her to take the survey. 
#You will be in charge of curating errors throughout the feedback collection process. You can access the data submitted to your testing feedback form through your '''Phase I Testing Feedback SmartSheet'''. You should log into the SmartSheet daily throughout the testing process to view and respond to feedback entries. Follow this process as you collect entries… 
#*Determine whether the issue is something you can resolve. For instance, if testers having difficulties logging in, or have trouble creating new health profiles, you will likely be able to assist them unless there is an underlying system error.
#*If you or your organization can resolve an issue, assign it to one of your staff. Indicate whose responsibility these issues are within the '''Phase I Testing Feedback SmartSheet''' under the “Assigned To” Column. ''Please be sure to save your changes when you enter new information in SmartSheet! Simply click on the save button in the left-hand menu, as shown below.'' [[File:SmartSheet-Save.png|thumb|center|upright=2.0|Don't forget to save changes in SmartSheet!]] 
#*When the issue has been resolved, please indicate this in the SmartSheet. Simply click the checkbox in the “Resolved?” column. If issues do not require action (for instance, someone has suggested a change to survey content, but you have decided not to make this change), please be sure that they are indicated as “Resolved” as well. ''Remember, be sure to save your changes whenever you enter new information into the SmartSheet!''
#*Identify issues that you and your staff cannot resolve on your own. These might include feedback about the survey itself (grammar mistakes, proposed question content, problems with branching in the survey) or feedback about the portal (requesting changes to text, correcting remaining errors in guide bios). These may also include issues that you have attempted to resolve on your own (such as difficulties with logins, creating new profiles, and so on) that now need to be escalated to the PEER Team for troubleshooting*.
#*Assign issues that you cannot resolve on your own back to us. Do this by typing “PEER Team” into the “Assigned To” column. Please alert GAPP over email as you assign these issues, and don’t forget to save changes to the Smartsheet!
#*As we work to resolve the issues assigned to us, we will indicate this within the feedback documentation. We will contact you with any questions, and if needed, will set up a screen share to assist in resolving issues. <nowiki>*</nowiki>The PEER Team offers troubleshooting only after all reasonable avenues have been exhausted. This means we expect that, with login problems or other account creation and navigation problems, you and your staff will investigate the issue (screen share with the tester, note the browser and version, the operating system and version, check the FAQ for any known issues. If you cannot resolve the issue, you should contact GAPP. The process…
##The DAO has a screen share with the tester and resolves the issue. If no resolution… 
##The DAO asks the PEER Team to help and have a screen share. If no resolution…
##Escalated to PEER administrators who develop a resolution plan. Examples of issues that are likely to be escalated are survey “freezes”, survey/portal display issues, and account issues. 
#Once all issues are marked as resolved check to identify that no issues remain, either on your own, or with the help of your testers. It is up to you whether you involve your other testers in this second round of checks – depending on the types of feedback provided you may or may not find your testers’ assistance in reviewing the system necessary (for instance, you will be able to check changes to the portal, and many changes to the survey, yourself). If all issues are indeed taken care of then you are ready to set a launch date. Shortly before your launch date, you will implement your live portal and commence Phase II Testing. 

===Checkpoint: Before Starting Phase II Testing===

After you have completed Phase I Testing and all errors have been resolved, you are ready to move to Phase II Testing. Phase II Testing will give members of your community a chance to preview your live survey directly before launch and provide last-minute feedback. Since this testing is done on the live portal, meaning the live portal is discoverable, it’s essential that you establish a quick turnaround time. Your testing start date should be two to three days in advance of your desired launch date, and you should request that your testers take the survey and submit feedback within 24 hours of receiving instructions. You will then have one to two days to resolve any remaining issues.

Before starting Phase II Testing, you must have... 

*'''Completed Phase I Testing''' and successfully resolved all feedback items.
*'''Reviewed instructions for managing data''' you will capture from your live portal. You should have received login information for both '''REDCap''' and '''Mixpanel'''. REDCap is an electronic data capture software system that allows you to view anonymous survey data which you are authorized to view. Mixpanel is a software which collects metadata about your survey respondents, including information about where the visitors to your portal are coming from, and the time they spend there. For more information about using these tools, please visit the [[Disease_Advocacy_Organization_(DAO)_Manual#Research_and_Data|Research & Data]] section of this wiki.
*'''Created and tested your badges''', and confirmed badge placement within your organization and with partners. You will be able to place the badges on different pages within your website or your partners’ websites, where they will direct visitors to your portal.

[[File:Badges.png|400px|thumb|center|Sample Badge]]

*'''Created your referral codes.''' These will enable you to track where portal users are coming from, based on your outreach initiatives, and even link certain users (for instance, users coming from a clinic) to specialized Privacy Dashboards (for instance, in the case of a clinic, a dashboard the includes that clinic as one of the institutions requesting data access). Each of your outreach initiatives should receive its own referral code.
*'''Checked your outreach plan.''' Pre-launch initiatives should be complete, and your launch plan should be in place. 

===Phase II Testing===

Phase II Testing is very similar to Phase I Testing, with a few important exceptions: it is with your live portal, it is with “real” survey takers who are providing actual live data, and the turnaround time is shorter. Once you have completed everything in the checklist, have your organization's Point Person contact the PEER Team and tell us that you are ready to begin testing. We will provide him or her with updated documentation, including... 

*Your '''Phase II Testing Feedback Form'''. This is where your testers will submit feedback.

*Your '''Phase II Testing Feedback SmartSheet'''. This is where your Point Person will manage and respond to feedback.

*Your '''Phase II Testing Instructions'''. Your Point Person will provide these instructions to your testers.

*Sample tester communications, including an invitation email. Your point person may use these templates to assist him or her in contacting and communicating with your testers. 

Once you've received these documents and ensured that you still have access to your '''"Tester Information Sheet"''' (you will be using the second tab this time, "Phase II") simply follow the instructions provided below. From start to finish, Phase II Testing should take nine to ten days. You should end Phase II Testing a one or two days prior to your launch date. 

====Phase II Point Person Instructions====

#Invite six to ten people to demo the live portal. As before, keep track of outreach to these individuals using your '''Tester Information Sheet'''. Plan to contact these individuals ''a week before'' your desired testing start date. Your testing start date should be 2-3 days prior to your desired launch date. You should invite individuals who occupy a diverse set of roles: affected individuals, parents of affected individuals, individuals who wish to fill out the survey for a deceased relative. Keep note of the capacity in which these individuals will take the survey in the “Tester Information” sheet, as well. You may use the template invitation email for these testers in the Appendix, available to you if you choose. 
#Make sure you can access the documentation spreadsheets that we have assigned to you: your '''Phase II Testing Feedback Form''' and your '''Phase II Testing Feedback SmartSheet'''. If you cannot, alert the PEER Team. 
#Send each confirmed tester an instructions email (see templates provided to you) containing the '''Phase II Tester Instructions''', after you have reviewed and customized them for your condition or disease. ''Send this email early two to three days before you plan to launch.'' As soon as they can (ideally within 24 hours of receiving your email), each tester should… 
#*Read the ‘tester’ instructions you provided.
#*Go to the live portal URL.
#*Create an account.
#*Take the survey.
#*Record any issues they have with the system using the documentation we have provided for you. Testers will submit feedback using the '''Phase II Testing Feedback Form'''.
#*Email you to confirm that they have completed testing, and to tell you how long it too them to take the survey. 
#As before, you will be in charge of curating errors throughout the feedback collection process. You can access the data from your testing feedback form using the '''Phase II Testing Feedback Smartsheet'''. You should log into the spreadsheet throughout the testing day to view feedback entries. Follow the same process as before, with Phase I testing, to address these issues. Remember: you ''must'' complete Phase II Testing within two to three days! All issues must must be resolved in time for your launch.'' 
#Once all issues have been resolved (one to two days after your Phase II testers take the survey), you are ready to launch the next day. 

==Outreach and Community Engagement During and After Launch==

'''Erika adapting Renee
'''

[[File:Outreach_and_Engagement_(version).docx|200px|thumb|400px|right|Outreach doc]]

Health Data Exploration Project: Personal Data for the Public Good
''Robert Wood Johnson Foundation''
“…individuals’ willingness to share is dependent on what data is shared, how the data will be used, who will have access to the data and when, what regulations and legal protections are in place, and the level of compensation or benefit (both personal and public).”

===Group Projects: Project Focus and Goals===

#Internally determine project focus and goals
#Assign tangible outcomes (ie goal for how many members of your community you want to reach out to and what percent you can enroll in the registry)
#Document strengths and weaknesses for: outreach, partnerships, and participation of community members

Understand the Community’s Perceptions of Data Sharing

[[File:Privacy Preferences .jpg|400px|thumb|center|Patient Preferences]]

===Launch Day===
Organizations must notify Genetic Alliance '''4 days''' before launch

*Send out a press release (a sample will be provided)
*Post an op-ed piece on a “do it yourself” news page. Some local newspapers have them. Here is an example of one in Colorado: http://www.denverpost.com/yourhub. Here is a list of op-ed information for various newspapers: http://www.theopedproject.org/index.php?option=com_content&view=article&id=47&Itemid=54
*Post your launch information on your Facebook page.
*Post your launch information/Press Release on Twitter.
*Send a Constant Contact (or other email client) message about the launch to your members.
*Post your launch information in all of your forums, listservs, groups

'''Remember''' it often takes '''three reminders''' for people to start filling out the survey. So while it is critical to notify people before launch, you must continue to do so during and after launch

==Checkpoint: Launch==

==Post Launch Outreach==

Your continued outreach will involve messaging to your members and others on a regular basis through a number of means, depending upon your ability. You will develop a specific plan for your own organization. Below are ideas for outreach to member participants and non-member, potential participants. These are meant to help you to think about what you might do, but is not meant to be directive.

''Frequency and reach are important to grabbing the attention of participants:''
*You will need to spend time on outreach every week for the number of weeks you are trying to get people to take your survey. They need to hear about it from you, your partners, the doctors and clinics you work with, the media, their friends and family, their support group sources, other support organizations and anyone else who can help you to make sure they realize they need to take action.
''
''Outreach to member patients''

The following are many different communication methods you can use to reach your own membership. Use as many of them as possible. If possible, assign someone in your organization to be responsible for getting these messages out on a weekly schedule.

===Outreach to Member Patients===
====Social media, listservs, and other groups====
*On a Facebook fan page, you can pay to boost posts on others’ feeds
*Post a variety of messages that appeal to different people in different ways
*Post regular updates about your success in getting responses and, if possible, put a thermometer on your website that shows the number of people who have taken the survey against your goal number.
*Not everyone is connected to the Internet, so it may be beneficial to call your members and speak to them directly about your project. This way, if they have any questions you can answer them immediately.

====All types of mail====
*Send emails through Constant Contact or other email clients
*Send postcards to your members by regular mail.
*If you use an advocacy alert system, send out a message asking for involvement
*Newsletters

====Utilize thought leaders in your membership====
*Reach out to specific individuals, asking for their help because they are leaders in your group. Ask them to take the survey and post on your Facebook page or other groups about how easy it was and why it is important. Be sure to ask a variety of people to get involved.
*Ask leaders to speak briefly at your launch party.

''Ask members to help''
*Many of your members have blogs and Facebook pages chronicling their experience within your community. Reach out to your membership to ask who has such blogs and Facebook pages and ask them to post about your project, and to tag your page in the post.
*Many of your members are also on Twitter. Be sure to ask them to retweet your tweets.
*Ask members to forward your messages to members they know who do not stay connected to your group.
*Create a Youtube about your project and ask your members to share it.
*Ask members to forward your messages about the project to interested communities of which they belong (such as support groups).
*Add a feature on your website so that people can refer their friends after completing the survey.

====Face to Face and Cyber Engagement====
''In-person meetings & Webinars''
*The size of your organization will largely dictate your ability to engage with your members face to face.
*Smaller organizations: Bring a laptop or tablet to a meeting and help people to use the survey
*Organizations of any size: Give a conference presentation about the project and why it is important (we have created a Powerpoint presentation for you to use. You can give the presentation at a conference or in a Webinar).
*Conduct a webinar on the project, record it and post it to your Web page

''Videos and YouTube''

Some of your members have created compelling videos that are posted on your website and Youtube. If they are patient stories, obtain permission to use links to the stories in your messaging. Your organization may already have videos. You can also create new ones and ask your members to create some to include an appeal to take the survey.

===Outreach to non-members: How to Get the Word Out===

====Events====
Your organization can conduct events directly related to your project (Launch party, Schedule Day)
#Launch party – have an in-person or virtual launch party (or both at the same time). Invite your members and any local partners you may have. Give a short presentation and have some fun as well. Announce your event through a Facebook event so that all of your followers get an invitation or send out formal invitations for an in-person event. You can also do a creative online launch party on Twitter or Facebook.
#SCHEDULE Day - To address some of the concerns everyone has about members not having time to do the survey, schedule an “event” post-launch where you ask your members to SCHEDULE that day to do their survey. On that day, have volunteers from your organization available to answer questions about filling out the survey (navigators). You can obviously do more than one SCHEDULE day.

''Outreach to non-members (potential participants)''
Carry out recruitment events
*Health Fairs
*Expos
*Disability and Chronic Illness Conferences
*Resource Fairs
[[Note]]: Make sure you have methods to contact the person again!

Your organization can obtain a booth at the events or in some cases you may be able to send materials for resource fairs, etc. without having to attend in person. If you obtain a booth, insure that you have the ability to sign up and later contact anyone who might be interested in your project.

====Social media and listservs====

*On Twitter:
*#conduct a tweetchat and reach out to specific people who are interested in your subject material: be sure to use #hashtags so you can see how many people are picking up on those.
*#send an @ message with information about your project to influencers, support groups, hospitals, media, advocates and others
*# tweet your press release and send targeted @ messages to the media with the press release (use i-Newswire to increase visibility and excitement surrounding your press release (http://www.i-newswire.com/)
*#identify people on Twitter who have very large followings and ask them to retweet your message. They do not have to be people who are related to your condition. (To ask them, send them an @message or direct message through Twitter).
*On Facebook: reach out to similar groups and ask them to post information about your project on their page. Have them tag your group in the post so interested people can have a link to your Facebook page.
*On Instagram: creast an account where you can post photos promoting your project, and use hashtags. You can link your Instagram to your Facebook page so that anything you post on Instagram will also appear on your Facebook.
*On Youtube:
*#Create an account if you haven't yet
*#Upload a Youtube about your project. You can talk about why this project is important; provide stories about members and more. Your Youtube could become very useful in other social media as well because you can tweet it and post it on Facebook. (The videos you created from your guide videos and for your home page can also work.)
*Find other similar or interested groups on Yahoogroups, Googlegroups and others. Contact them about promoting your project

====Media: News Outlets====
*Send a press release at launch. Be sure to post it on your website so that you can link to it on social media.
*Identify bloggers and others who have written on your subject or who write about populations related to you.
*#Send them a written guest blog post or ask them to interview you for their blog.
*#Ask them to do a follow-up with information about your project.
*Consider creating a podcast that you can use for many different purposes. Here is information about how to do that. http://www.wikihow.com/Start-Your-Own-Podcast

====Blogs and other internet posts====
''Blogs and YouTube''
*Ask bloggers to post about your project
*Ask bloggers and YouTubers if you can use their stories in your outreach with links and credits

''Articles and blog posts describing your condition, organization, or topic of interest''
*Contact the author (usually listed within the article) and ask them to write another story about your condition and include information about your project
*Ask them to post a badge beside the article they already wrote
*Write a guest blog post for them that relates to the article they wrote with your project information in it
*If you cannot reach them, place a comment on their blog with a link to your project
*Contact the author of medical articles/papers and ask them to help with outreach to their patients

====Advertisements====

''Paid Advertisements''
*Ads or classifieds in newspapers – sometimes the smaller community newspapers are very inexpensive.
*Ads on other web sites, blogs
*On Facebook, Google, Yahoo, etc. These are usually charged on a per-click basis and you can set limits.
**Google Adwords (http://www.google.com/adwords/index.html?sourceid=awha&subid=us-en-ha-aw-bkup0~29971762445&gclid=CJ6n6_Osqb4CFcOBfgodAKwAvg)
***What are Adwords? Adwords is the overarching term for Google’s method of selling and running ads. Together, we will generate a list of “keywords” associated with your group and conditions. When one of our keywords is typed into a Google search field, google runs an automatic auction of all Adword users who have that keyword listed. Google then displays Advertisements (which you will also create), based on the order of this auction. You’ve probably seen these Ads when you are using Google products.
***Designing Keywords: Keywords should be both words and phrases
****Imagine what a patient might be searching for: When you sit down to Google, what do you type?
****Trend towards more specific words. Generic words like “headache” “rash” or “disease” are not effective
****Avoid “alphabet soup” and any in-house shorthand that most people won’t recognize
****Don’t forget “obvious” words, like the name of your organization and disease
**Facebook Advertising (https://www.facebook.com/advertising?campaign_id=194417723019&creative=36922363749&keyword=facebook+advertising&extra_1=793bcee9-b78e-32e8-820e-0000733859b4&extra_2=fbads)
**Yahoo Advertising (https://advertising.yahoo.com/)

''Unpaid Advertisements''
*Links on other Web pages
*Public Service announcements (one great place to get your announcer-read PSA’s on the air is at college campus radio stations. People in the local area and students listen to those stations. These stations are nonprofits and they are operated by students).
**Here is an example: http://www.kdur.org/ContactUs.aspx

===Outreach to non-members: Who to Spread the Word To?===

====Who to Target====

*Organizations, hospitals, clinics, doctors, online groups such as Yahoogroups and others who may have an interest in helping to promote your project.
*Affinity groups
**Partner channels – clinics, pharmacies, hospitals, specific support groups, similar organizations with which you already have a relationship or who you can connect with before launch
*For condition-specific groups
**Organizations dealing with some of the symptoms related to your condition such as vision loss, hearing loss, chronic pain, cancer, lung disease, seizures, paralysis, anemia, osteoporosis, diabetes, heart conditions, etc.
*Specific segments of society that may have a special connection to your disease or specialty such as Jewish groups, LGBTQ communities, minority groups, women’s organizations, organizations serving people from specific countries, immigrants
*Every day places and specific places where you might reach them:
**Libraries
**Grocery stores
**Salons
**Sports facilities
**Retirement communities
**Public health centers
**Therapists: massage, physical, speech, occupational, drug/alcohol, mental health (including community mental health centers)
**Natural health spas, acupuncturists, chiropractors
**Developmental disability service providers
**Schools or universities
**Courthouses, detention centers, and other government buildings
**Clubs and fraternal organizations such as Lions, Optimists, etc.
**Other types of nonprofit organizations, including foundations that fund
**Research, disability issues, etc.

====How to Engage Them====
*Print flyers and brochures for partners to hand to patients. There are many online printing sources that are inexpensive and easy to use such as www.gotprint.com.
*Use badges on their sites if they are willing
*Ask partners to:
**write an article for their newsletter about your project
**post your information on their Facebook pages, and tag your organization in the post.
**tweet about your project, and mention your organization
**For those who are new to social media:
***Mention = @XYZorganization
***You will see these mentions in your notifications on Twitter. Be sure to thank them.
*Ask your current members where they communicate outside of your group. Do they belong to other support groups or online forums?
*Ask them to help you to reach those groups or to post for you.

===Materials===
Here is a list of the materials that Genetic Alliance has modifiable templates for. In order to best reach out to your community and beyond, use these as samples and supplement them with other necessary documents. Some of these materials have been previously mentioned in the document.

If you have not done so already, '''branding''' is critical to member recognition of your organization and subsequently your mission

====Materials for Organization Employees / Genetic Alliance Use====
*Participant Tracking and Distribution
**Breaks down of the participant population by age, race/ethnicity, member retention.
**Crosses data types and sources with current and proposed data on network population, years collected, and percent captured electronically

*PEER Outreach Measurement
Tracks method of outreach (badge, rack card, Facebook, Twitter, etc), where and when the outreach took place, referral code used, message summary, and additional information

====Materials for Dissemination====
*Materials to send to clinics
**Flyers
**Brochures
**Rack Card
**Postcards

*To send to your community
**Sample First Launch Press Release
**Sample Email Blast

*To Media Outlets
**Sample First Launch Press Release (same as one sent to community members)

===Document Your Efforts===

Use the excel spreadsheet ('''PEER Outreach Measurements''') to document which methods of outreach do and do not work. Complete the word document ('''Participant Tracking and Distribution''') to better see who is taking the survey and what subsets of your community you must focus.

Track the number of impressions (number of people reached by each method of outreach) and conversions to help you understand what messaging is working.

====Complete the following in order to properly document your efforts====
*Create referral codes for each method of outreach (referral code format is shown below)
*Track tweet hashtags using Tweetreach (www.tweetreach.com) to track hashtags in tweets
*On Twitter, count your retweets and see how many people were reached through other Twitter accounts. (How many followers they have).
*On Facebook, count the number of likes another partner page has to gain an idea of how many people were reached.
*Number of articles and blog posts written about your project in various newsletters and media outlets and the corresponding number of impressions made. Be sure to post these on Facebook and Twitter when they are published to get the most traction.
*Track clicks through Constant Contact
*Use www.tinyurl.com. Track the number of clicks on those links through their site.
*Track website hits. If you don’t already have a method for this, try Google Analytics.
*Number of:
**Webinar attendees
**Members who received your emails or messages on Facebook (according to how many likes you have)
**People who say they will “attend” your schedule day
**People who attend your launch party
**Attendees at a specific event or the number of collateral materials you handed out.
*Send reports to '''Genetic Alliance on outreach progress''' (in first 10 days send daily reports, then weekly reports)
**How many members are signed up? (Total and since the last update)
**Distribution of survey takers (individuals filing it out for themselves? as a caregiver?)
**Most and least effective way to recruit participants

====Referral Codes====

You will assign codes to each site and method of outreach and you can also use different codes for different themes of messaging. For example, if you put a badge on a particular web site, there will be a code associated with that badge that will tell you which site they came from. But you can also use referral codes to identify which message themes are resonating with people. Prior to developing your messaging, think about what types of themes would motivate your members. Keeping themes of messages in mind, craft your messages and accompanying referral codes.
*Example: Message theme: “effective treatments” would have a different code than “family impact”

You can create special codes for:
*Badges – to show where the referrals were generated (i.e., a specific clinic)
*Twitter - use different codes for each type of messaging you use
*Constant Contact email messages – use different codes for each one you send so that you can tell which messages were most effective at getting people to actually complete the survey.
*Facebook posts – use different codes for each message theme.
*Flyers and brochures – use different referral codes for where they were used, if possible.
*Newsletter, postcards, etc. – mailings should have different codes to distinguish them from on another.

[[File:Referral Code.png|400px|thumb|center|Sample Referral Code]]

====Messaging====
Use different types of messaging to involve participants.

Tips:
*Your messaging should focus on “why” people should be involved, rather that “what.”
*Whenever possible, include a photo of, or an endorsement from, one of your organization leaders that members will recognize and trust.
*Messages to avoid:
**Anything that is not participant-centered. Appeal to them on a personal level.
**Too many acronyms or jargon within a message
**Negative messaging
**Long messages
*Measure which messages are impactful by keeping track of how many surveys were completed after you sent out a particular message (use tracking sheet)
*Incorporate participant. If you do not already have some, make a list of themes you want to have in your messaging for your project.
*Include patient stories as part of your messaging

====Troubleshooting====

'''Document lessons learned from your participants.''' This will benefit your participants and other organizations

Overcoming barriers
Some people struggle with technology or have questions while they are completing the survey. Develop ways to answer their questions such as:
*Skype sessions
*Training and utilizing navigators
*Being available by phone on certain days/times to answer questions
*Inviting members to email their questions and answering all questions received in an FAQ on your Web site, Facebook or any means that your members use regularly
*Webinars to explain and answer questions
*Conference calls to answer questions (document questions and answers and put them on your site in the form of an FAQ)
*Encouraging members who have these issues to invite a friend or family member to help them to fill out the survey
*Encouraging members to connect with other members through your Facebook group or other social media, and ask them about their experience with the survey
*In your survey, include a short question about users experience, and include these responses on your website. Address negative responses and give future users advice on how to avoid things that confused previous survey takers.

Anticipate “trust issues”
*You may need to craft some messages about why people can trust this project. You can also invite them to a webinar, tweetchat or Facebook discussion about it. Identify the root of their distrust (ie Internet security or lack of understanding technology)
*Mention that similar projects have benefitted other communities (i.e. Sickle Cell communities) OR the other disease advocacy organizations that are also participating to help gain trust.

====Sample Outreach Plan====

[[File:Sample_Outreach_Plan.jpg|400px|thumb|center|Sample Outreach Plan]]

==Research & Data==

To be updated...

==Additional Surveys & Updates==

To be updated...

==User Support==

'''Wayne (eventually)'''

Disease Advocacy Organization (DAO) Manual

2015-02-11T16:51:37Z

Advocacy Admin: /* Pre-Launch Outreach and Community Engagement */

''This is an unfinished page. Please check back later.''

An organization's guide to the Platform for Engaging Everyone Responsibly. Read on to learn how to set up your PEER portal.

[[File:dao-manual.png|200px|thumb|400px|right|DAO-Flowchart]]
==Initial Consultation with the PEER Team==

'''^Rename?'''

Having a clear direction for your project is an essential first step in developing your PEER portal. Here we'll tell you a bit more about why we've created PEER ([[Disease_Advocacy_Organization_(DAO)_Manual#About_PEER|About PEER]]), and assign some activities to help you start planning for your project ([[Disease_Advocacy_Organization_(DAO)_Manual#Expectations|Expectations]]). Please read this content ''before'' your initial consultation with the PEER Team. Then, following this meeting, you will start on portal development. 

===About PEER===

PEER creators Genetic Alliance and Private Access designed PEER with a central question in mind: how can we help you and your community to transform health? This means that PEER has been designed with the needs of communities in mind. How do we create a safe space to share health information or other sensitive data? [[File:Core-Registry-Components.png|upright=2.0|thumb|right|How do the components of PEER compare to those of typical registries?]] How do we respect diverse opinions about data sharing within our communities? How do we engage in research with our communities over time, yet not overwhelm our participants with consent after consent? With PEER, we hope you'll be able to answer these questions and more.

In many ways, PEER is similar to other registry platforms. It has the same core features: a tool for data entry, a database of deidentified data, and a query feature that allows for inquiry and analysis within said database. However, whereas access to data in other registries is dependent on the privacy and access policy of ''the registry owner'', to which participants must consent in advance, in PEER access to data is dependent on privacy and access preferences chosen ''by the participants''. Participants even choose privacy and access preferences for their own contact information, which is stored in PEER separately from their health data.

Participants manage privacy and access preferences using their Privacy Dashboard, which empowers each participant, or person legally authorized to act on his or her behalf, to indicate who constitutes an authorized user of the participant’s information, and in what form. Potential authorized users include disease advocacy organizations, researchers, research consortiums and data analysis platforms, while usage forms comes in three types: 'Discover My Anonymous Information', 'Receive My Contact Information', and 'Export My Anonymous Information'. Settings for 'Discover' control who can locate a participant's deidentified data, while settings for 'Contact Information' control who can access to a participant's contact information. Settings for 'Export' control who can export deidentified data from the PEER system. Across each user and for each usage form, participants have the option to permit access, decline access, or wait for more information before deciding. [[File:Privacy-Dashboard.png|350px|thumb|left|'''The Privacy Dashboard.''' Participants choose who can and cannot access their data, and for what purpose, in a granular and dynamic consent model.]] And of course, participants can change these preferences over time.

PEER seeks to engage participants in other ways, as well, by providing each user community with a unique experience of the system - something important in a cross-condition registry. Each PEER portal has community 'guides', identified by the portal organizations, who are knowledgeable about the portal's privacy and access preferences. Guides offers suggestions for these preferences based on their perspectives regarding privacy, and participants can choose their own preferences, or choose to educate themselves about possible alternative selections. Each PEER portal also works to engage participants during data collection. Portals include custom surveys designed by organizations with community input. While these surveys are built using the PEER questions library, a set of common data elements built using validated medical instruments, organizations can also use the PEER Survey Application (PSA) to write disease- or condition-specific questions on topics relevant to their target communities. Participants take these custom surveys within a 'gamified' interface, where each question answered shows how the participant's response compares to responses from others in their community. Upon finishing these surveys participants can then continue to answer gamified questions on general medical health, which exist across PEER's cross-condition system. Participants can also return to update surveys, as many fields are longitudinal, or to complete new surveys provided by organizations and researchers.

From start to finish, PEER is about its participants and the role those participants have to play in improving health. We look forward to helping you to bring this research tool to your community. 

===Expectations===

'''^Rename?'''

Your PEER portal will be unique to your organization and target communities. It is up to you to both define the direction for your PEER project, and develop your project content. If you have not already, we ask that you complete the following activities with your organization before your initial consultation with the PEER Team. 

====Set Preliminary Goals====
Define your project.
*'''Finalize your project focus.''' Ask: What is the end goal for your project? What do you want to learn, and what research do you hope to conduct? Who do you want to reach?
*'''Set participation goals for your project.''' Ask: What are your quarterly participation goals? On a 'big picture' level, what will you do to meet them? Will this project require expanding your reach? 

====Consult With Your Community====

Incorporate your community's perspective on your project.

*'''Reach out.''' Contact five to ten stakeholder individuals in your target communities, with whom you have an existing relationship. Tell them about your project, and ask them to meet with you to share their perspectives.
*'''Engage'''. Schedule a call or in-person meeting with your stakeholders, and start a conversation. You will use this conversation to refine your own project goals, which you defined in the [[Disease_Advocacy_Organization_(DAO)_Manual#Set_Goals|Set Goals]] activity, to help you plan future outreach and engagement activities, and even to assist you in choosing topics for your survey. Suggested Questions: What do you want to learn from this project? What do you want to tell researchers? What do you stand to gain from this project? How would you tell our community about this project? 

====Review Timelines & Responsibilities====

Each PEER project consists of five general components, which will be discussed in detail later on in this manual. Now that you've finalized the direction for your project, read over the following components and simultaneously review the timeline provided to you (instructions for accessing this available [[Disease_Advocacy_Organization_(DAO)_Manual#timeline|here]]). How will this timeline impact your goals?

*'''''The portal.''''' Your community's unique entrance to the PEER database is known as your PEER portal. It will house both your community guide content and your surveys. You will be responsible for designing your portal - from selecting portal color scheme, to crafting portal messaging, to choosing portal-specific privacy options - and for implementing your portal on your website.
*'''''The guides.''''' Guides are trusted community members who act as the face of your portal to participants, and simultaneously assist participants in navigating the privacy settings and choosing privacy options. Each guide will create several content pieces for this purpose, including videos, biographies, and sample privacy settings. You will be responsible for selecting these guides, and for assisting your guides in developing their content.
*'''''The survey.''''' PEER is committed to helping participants share data on their terms, and to doing so in a way that makes that data as useful as possible for researchers. We have developed a library of CDE Survey Segments on a variety of health topics, each consisting of multiple common data elements (CDEs). Each segment consists of validated health survey questions that have been standardized across the PEER platform. You will develop your survey from this library. Depending on the content areas you, your medical advisors, and your community wish to address, you may also develop new segments that contain questions specific to your organization's needs.
*'''''The outreach plan.''''' Community engagement is an essential part of your PEER project, both as you engage with portions of your community to develop the content described above, ''and'' as you prepare to launch your portal to the community as a whole. You will be responsible for developing and implementing an outreach plan for pre-launch activities (preparing your community for launch), launch activities (directing your community to your portal and survey directly following launch), and post-launch activities (ongoing outreach to bring new visitors to your portal, or to re-engage with current participants).
*'''''The IRB application.''''' The PEER system works with communities to foster and promote research, and as a research tool that administers surveys and collects information, PEER and its projects require IRB approval. You will apply to the Genetic Alliance IRB for approval, once you have finished developing your survey and outreach plan. 

====Assign Project Roles====

Decide who in your organization will be responsible for seeing these pieces through. You will need a point person for each of the five components introduced above: the portal, the guides, the survey, the outreach plan and the IRB Application. Individual components need not be assigned to separate individuals - you can also divide components up between multiple individuals, or assign multiple components to one individual. However, whatever you decide, is essential that you let the PEER Team know during the initial consultation. 

===Setting Up The PEER Portal===

===Timeline===

Smartsheet? Excel?

==Pre-Outreach Efforts==

'''Katherine - move Renee content'''

===Developing Your Outreach Plan===

===Implementing Your Outreach Plan: Pre-Launch Activities===

==PEER Portal Design Decisions==

To be updated...
===Content and User Interface(UI)===

'''Katherine - wait for new system?'''

===Videos & Guides Development===

'''Tanya'''

==Survey Questions and Development==

'''Wayne'''

===Question Formatting===

'''PEER Question Breakdown'''

[[File:6a.jpg|577px|thumb|center|PEER Questions Layout]]

[[File:6b.jpg|504px|thumb|center|Detailed: View All Entries]]

'''PEER Info Panel'''

DAO Challenge: We want our users to be as informed as possible throughout the survey experience

PEER Response: '''''Info Panel''''' - introduce a new section, guide along, give info throughout, or conclude the survey.
*Add Response '''Info Panel'''
[[File:7a.jpg|378px|thumb|center]]

*PEER View
[[File:7b.jpg|646px|thumb|center]]

'''Outcome:''' the user is well-informed throughout, and the survey is intuitive.

*You can also use '''Info Panel''' to '''End Survey''' which will hide the Continue button and stop the survey.
[[File:8a.jpg|456px|thumb|center]]

*PEER View
[[File:8b.jpg|676px|thumb|center|PEER View]]

===Using the PEER Questions Manager===

'''Wayne'''

===Editing Survey Questions===

'''Wayne'''

===IRB Application Process===

Each organization must '''complete their outreach plan before beginning the IRB application.''' If the outreach plan changes, the organization must reapply for IRB approval

Follow these Instructions and consult Genetic Alliance for a copy of the '''Application to Conduct Research with Human Participants'''
*Read the Platform for Engaging Everyone Responsibly Western IRB Application
*Ask Genetic Alliance to clarify any issues
*Read the Application to Conduct Research with Human Participants
*Complete the NIH or other [https://phrp.nihtraining.com/users/login.php|Human Participant Protections] training
*Create your research plan:
*#Survey instrument beginning with Common Data Elements already in your REDCap account (or on the data dictionary spreadsheet we exported for you).
*#Outreach plan
*#Risk mitigation plan (how will you protect privacy and confidentiality at your site, in addition to the technology of PEER)
*Create or update your '''NIH style biosketch''' (you may use other formats, but you will need an NIH style biosketch if you are a co-PI on NIH or PCORI applications in the future).

[[File:Biosketch.jpg|600px|thumb|center|Biosketch]]

*Fill out the Application to Conduct Research with Human Participants
*Create your protocol number. Use four distinctive letters and start with 001. Subsequent protocols will be 002, 003…
* DO NOT remove or alter sections of the form that may not be applicable to your study (i.e. do not submit a protocol application with section III deleted if your study is not funded). The document must be provided to the IRB intact. If a section is not applicable to the research, please put “N/A” in that answer section.
*Attach a list of Investigators and study personnel as an Appendix. Include NIH style biosketch (new format) for all investigators.
*Before submitting the application, delete all highlighted sections

What requires a new IRB application?
#A new survey
#A new recruitment strategy in which materials need to be approved
#Substantive changes to existing recruitment materials or survey (it’s best to date-stamp your current ones and send any revised one for approval)

===Setting Up User Support System (Customer Support)===

'''Tanya'''

==Selected Audience Survey Testing==

After implementing your survey using PEER Admin, you will go to test the survey inside of your PEER Portal. The following section provides a step-by-step overview of this process.

You will complete testing in two phases. Phase I Testing, which takes place within your organization prior to preparing for portal launch, will enable you to identify and address any content errors in your survey, as well as general system errors. Phase II Testing, which takes place with members of your community directly before launch, will allow you to incorporate real user feedback before launching your portal.

Please note that testing your survey is an iterative process of finding items to change and fixing them. Depending on the length of your survey and the number of changes that need to be made after the initial pass, testing and incorporating feedback may take some time. On average, from making contact with testers to implementing changes, testing takes three weeks total. This does not include time in between phases. 

===Checkpoint: Before Starting Phase I Testing===

You must have... 
*'''Received IRB approval''' for your project.
*'''Implemented your finalized survey content''', including PEER Common Data Instruments and your own organization's questions, using the PEER Questions Manager.
*'''Finalized the future location of your PEER Portal''', and entered this information into PEER Admin. Remember, you need two different locations on your website for your demo portal and your live portal. Your demo portal, which is an exact replica of your live portal, allows you to test and view your portal without interfering with data collection.
*'''Completed portal customization''' within PEER Admin. You should have entered guide information, and chosen your PEER color scheme.
*'''Installed your demo PEER Portal''' by inserting your demo portal code (available following portal customization) on your demo webpage.
*'''Assigned a “Point Person” within your organization''' to liaise with the PEER Team throughout the testing process. When you are ready to start testing, it is up to your Point Person to let the PEER Team know! 

===Phase I Testing===

After completing the checklist items above, you are ready to start Phase I Testing. Phase I Testing will help you to identify possible errors in your survey, such as branching errors or grammatical errors. This phase of testing is conducted entirely within your demo portal, with the assistance of members of your staff or trusted partners.

To get started, have your organization's Point Person contact the PEER Team and tell us that you are ready to begin Phase I Testing. We will provide your point person with the required documentation, including... 

*Your '''Tester Information Sheet'''. This is where your Point Person will keep track of outreach to your testers, as well as information about your testers' roles when taking the survey. You will notice that there are two tabs in this sheet. For now, ''only'' use the 'Phase I' tab.

*Your '''Phase I Testing Feedback Form'''. This is where your testers will submit feedback.

*Your '''Phase I Testing Feedback SmartSheet'''. This is where your Point Person will manage and respond to feedback.

*Your '''Phase I Testing Instructions'''. Your Point Person will customize these instructions and provide them to your testers.

*Sample tester communications, including an invitation email. Your Point Person may use these templates to assist him or her in contacting and communicating with your testers. 

Once you've received these documents follow the instructions provided below to begin. From start to finish Phase I Testing should take you about two weeks, although this may change depending on the magnitude of the edits. Please consult the provided timeline, the '''Phase I Testing Timeline''', as you progress through the instructions. 

====Phase I Point Person Instructions====

#Choose and invite six people, including yourself, to test the demo portal survey. Keep track of outreach to these individuals using your '''Tester Information Sheet'''. Plan to invite these individuals ''a week before'' you wish to begin testing. They should be individuals who have a sense of your condition or disease, and are comfortable with technology in general. Together, you are all the "testers". If you wish, you may use the template invitation email provided to you. 
#Make sure you can access the documentation spreadsheets that we have assigned to you: your '''Phase I Testing Feedback Form''' and your '''Phase I Testing Feedback SmartSheet'''. If you cannot, alert the PEER Team. Once you have ascertained that you can access these sheets, take some time to familiarize yourself with the '''Phase I Testing Feedback SmartSheet'''. You will use this sheet to manage testers' feedback, and keep a record of who on your staff has been assigned to resolve which feedback items. If you like, you can give your staff access to the SmartSheet, as well. 
#Assign each of the testers a "role" for testing the survey. As you saw during the process of building your survey, the survey is designed to capture information either from individuals who are answering for themselves, or from individuals who are answering for another person. Different roles reflect this distinction. The minimum number of tester roles is listed below, but depending on the choices you made when designing your survey there may be additional roles to consider (for instance, individuals affected with a condition versus individuals who are carriers for a condition). If this is the case, you may need to assign multiple roles to your testers, as it's important to test the entirety of your survey. Be sure to note who will receive which roles using your '''Tester Information Sheet'''. Note that you may also want to assign Internet browsers with roles, to ensure that your survey is tested across as many platforms as possible. For instance, the tester answering for an affected male answering as himself might test the survey on Safari, while the tester answering for an affected female answering for herself might test the survey on Google Chrome. If you choose to assign browsers (recommended), please make note of this in the '''Tester Information Sheet'''. '''''Survey Roles''''' 
#*An affected male, answering for himself
#*An affected female, answering for herself
#*Someone with the legal right (caregiver, assistant, relative, friend…) to answer for an affected male who is decisionally impaired
#*Someone with the legal right (caregiver, assistant, relative, friend…) to answer for an affected female who is decisionally impaired
#*Someone with the legal right to answer, responding for a deceased male
#*Someone with the legal right to answer, responding for a deceased female
#*Any additional roles that you assign 
#As soon as you can, send each confirmed tester an instructions email (see templates provided to you) containing the '''Phase I Tester Instructions''' which we have provided to you. Be sure that you have reviewed these instructions yourself, and customized them for your condition or disease. Within 2-3 days of receiving your email, each of the testers should… 
#*Read the '''Phase I Testing Instructions''' you provided.
#*Go to the demo URL.
#*Create an account in the role or roles he or she has been assigned. Depending on their roles, testers may need to make additional profiles within their accounts to test the survey.
#*Test by proceeding as though he or she were the person in the role affected by the condition or disease.
#*Record any issues using the documentation we have provided. Testers will submit feedback using the '''Phase I Testing Feedback Form'''. For a detailed list of items that testers should look out for during this process, please see the '''Phase I Testing Instructions'''.
#*Email you to confirm that he or she has completed testing, and to tell you how long it took him or her to take the survey. 
#You will be in charge of curating errors throughout the feedback collection process. You can access the data submitted to your testing feedback form through your '''Phase I Testing Feedback SmartSheet'''. You should log into the SmartSheet daily throughout the testing process to view and respond to feedback entries. Follow this process as you collect entries… 
#*Determine whether the issue is something you can resolve. For instance, if testers having difficulties logging in, or have trouble creating new health profiles, you will likely be able to assist them unless there is an underlying system error.
#*If you or your organization can resolve an issue, assign it to one of your staff. Indicate whose responsibility these issues are within the '''Phase I Testing Feedback SmartSheet''' under the “Assigned To” Column. ''Please be sure to save your changes when you enter new information in SmartSheet! Simply click on the save button in the left-hand menu, as shown below.'' [[File:SmartSheet-Save.png|thumb|center|upright=2.0|Don't forget to save changes in SmartSheet!]] 
#*When the issue has been resolved, please indicate this in the SmartSheet. Simply click the checkbox in the “Resolved?” column. If issues do not require action (for instance, someone has suggested a change to survey content, but you have decided not to make this change), please be sure that they are indicated as “Resolved” as well. ''Remember, be sure to save your changes whenever you enter new information into the SmartSheet!''
#*Identify issues that you and your staff cannot resolve on your own. These might include feedback about the survey itself (grammar mistakes, proposed question content, problems with branching in the survey) or feedback about the portal (requesting changes to text, correcting remaining errors in guide bios). These may also include issues that you have attempted to resolve on your own (such as difficulties with logins, creating new profiles, and so on) that now need to be escalated to the PEER Team for troubleshooting*.
#*Assign issues that you cannot resolve on your own back to us. Do this by typing “PEER Team” into the “Assigned To” column. Please alert GAPP over email as you assign these issues, and don’t forget to save changes to the Smartsheet!
#*As we work to resolve the issues assigned to us, we will indicate this within the feedback documentation. We will contact you with any questions, and if needed, will set up a screen share to assist in resolving issues. <nowiki>*</nowiki>The PEER Team offers troubleshooting only after all reasonable avenues have been exhausted. This means we expect that, with login problems or other account creation and navigation problems, you and your staff will investigate the issue (screen share with the tester, note the browser and version, the operating system and version, check the FAQ for any known issues. If you cannot resolve the issue, you should contact GAPP. The process…
##The DAO has a screen share with the tester and resolves the issue. If no resolution… 
##The DAO asks the PEER Team to help and have a screen share. If no resolution…
##Escalated to PEER administrators who develop a resolution plan. Examples of issues that are likely to be escalated are survey “freezes”, survey/portal display issues, and account issues. 
#Once all issues are marked as resolved check to identify that no issues remain, either on your own, or with the help of your testers. It is up to you whether you involve your other testers in this second round of checks – depending on the types of feedback provided you may or may not find your testers’ assistance in reviewing the system necessary (for instance, you will be able to check changes to the portal, and many changes to the survey, yourself). If all issues are indeed taken care of then you are ready to set a launch date. Shortly before your launch date, you will implement your live portal and commence Phase II Testing. 

===Checkpoint: Before Starting Phase II Testing===

After you have completed Phase I Testing and all errors have been resolved, you are ready to move to Phase II Testing. Phase II Testing will give members of your community a chance to preview your live survey directly before launch and provide last-minute feedback. Since this testing is done on the live portal, meaning the live portal is discoverable, it’s essential that you establish a quick turnaround time. Your testing start date should be two to three days in advance of your desired launch date, and you should request that your testers take the survey and submit feedback within 24 hours of receiving instructions. You will then have one to two days to resolve any remaining issues.

Before starting Phase II Testing, you must have... 

*'''Completed Phase I Testing''' and successfully resolved all feedback items.
*'''Reviewed instructions for managing data''' you will capture from your live portal. You should have received login information for both '''REDCap''' and '''Mixpanel'''. REDCap is an electronic data capture software system that allows you to view anonymous survey data which you are authorized to view. Mixpanel is a software which collects metadata about your survey respondents, including information about where the visitors to your portal are coming from, and the time they spend there. For more information about using these tools, please visit the [[Disease_Advocacy_Organization_(DAO)_Manual#Research_and_Data|Research & Data]] section of this wiki.
*'''Created and tested your badges''', and confirmed badge placement within your organization and with partners. You will be able to place the badges on different pages within your website or your partners’ websites, where they will direct visitors to your portal.

[[File:Badges.png|400px|thumb|center|Sample Badge]]

*'''Created your referral codes.''' These will enable you to track where portal users are coming from, based on your outreach initiatives, and even link certain users (for instance, users coming from a clinic) to specialized Privacy Dashboards (for instance, in the case of a clinic, a dashboard the includes that clinic as one of the institutions requesting data access). Each of your outreach initiatives should receive its own referral code.
*'''Checked your outreach plan.''' Pre-launch initiatives should be complete, and your launch plan should be in place. 

===Phase II Testing===

Phase II Testing is very similar to Phase I Testing, with a few important exceptions: it is with your live portal, it is with “real” survey takers who are providing actual live data, and the turnaround time is shorter. Once you have completed everything in the checklist, have your organization's Point Person contact the PEER Team and tell us that you are ready to begin testing. We will provide him or her with updated documentation, including... 

*Your '''Phase II Testing Feedback Form'''. This is where your testers will submit feedback.

*Your '''Phase II Testing Feedback SmartSheet'''. This is where your Point Person will manage and respond to feedback.

*Your '''Phase II Testing Instructions'''. Your Point Person will provide these instructions to your testers.

*Sample tester communications, including an invitation email. Your point person may use these templates to assist him or her in contacting and communicating with your testers. 

Once you've received these documents and ensured that you still have access to your '''"Tester Information Sheet"''' (you will be using the second tab this time, "Phase II") simply follow the instructions provided below. From start to finish, Phase II Testing should take nine to ten days. You should end Phase II Testing a one or two days prior to your launch date. 

====Phase II Point Person Instructions====

#Invite six to ten people to demo the live portal. As before, keep track of outreach to these individuals using your '''Tester Information Sheet'''. Plan to contact these individuals ''a week before'' your desired testing start date. Your testing start date should be 2-3 days prior to your desired launch date. You should invite individuals who occupy a diverse set of roles: affected individuals, parents of affected individuals, individuals who wish to fill out the survey for a deceased relative. Keep note of the capacity in which these individuals will take the survey in the “Tester Information” sheet, as well. You may use the template invitation email for these testers in the Appendix, available to you if you choose. 
#Make sure you can access the documentation spreadsheets that we have assigned to you: your '''Phase II Testing Feedback Form''' and your '''Phase II Testing Feedback SmartSheet'''. If you cannot, alert the PEER Team. 
#Send each confirmed tester an instructions email (see templates provided to you) containing the '''Phase II Tester Instructions''', after you have reviewed and customized them for your condition or disease. ''Send this email early two to three days before you plan to launch.'' As soon as they can (ideally within 24 hours of receiving your email), each tester should… 
#*Read the ‘tester’ instructions you provided.
#*Go to the live portal URL.
#*Create an account.
#*Take the survey.
#*Record any issues they have with the system using the documentation we have provided for you. Testers will submit feedback using the '''Phase II Testing Feedback Form'''.
#*Email you to confirm that they have completed testing, and to tell you how long it too them to take the survey. 
#As before, you will be in charge of curating errors throughout the feedback collection process. You can access the data from your testing feedback form using the '''Phase II Testing Feedback Smartsheet'''. You should log into the spreadsheet throughout the testing day to view feedback entries. Follow the same process as before, with Phase I testing, to address these issues. Remember: you ''must'' complete Phase II Testing within two to three days! All issues must must be resolved in time for your launch.'' 
#Once all issues have been resolved (one to two days after your Phase II testers take the survey), you are ready to launch the next day. 

==Outreach and Community Engagement During and After Launch==

'''Erika adapting Renee
'''

[[File:Outreach_and_Engagement_(version).docx|200px|thumb|400px|right|Outreach doc]]

Health Data Exploration Project: Personal Data for the Public Good
''Robert Wood Johnson Foundation''
“…individuals’ willingness to share is dependent on what data is shared, how the data will be used, who will have access to the data and when, what regulations and legal protections are in place, and the level of compensation or benefit (both personal and public).”

===Group Projects: Project Focus and Goals===

#Internally determine project focus and goals
#Assign tangible outcomes (ie goal for how many members of your community you want to reach out to and what percent you can enroll in the registry)
#Document strengths and weaknesses for: outreach, partnerships, and participation of community members

Understand the Community’s Perceptions of Data Sharing

[[File:Privacy Preferences .jpg|400px|thumb|center|Patient Preferences]]

===Launch Day===
Organizations must notify Genetic Alliance '''4 days''' before launch

*Send out a press release (a sample will be provided)
*Post an op-ed piece on a “do it yourself” news page. Some local newspapers have them. Here is an example of one in Colorado: http://www.denverpost.com/yourhub. Here is a list of op-ed information for various newspapers: http://www.theopedproject.org/index.php?option=com_content&view=article&id=47&Itemid=54
*Post your launch information on your Facebook page.
*Post your launch information/Press Release on Twitter.
*Send a Constant Contact (or other email client) message about the launch to your members.
*Post your launch information in all of your forums, listservs, groups

'''Remember''' it often takes '''three reminders''' for people to start filling out the survey. So while it is critical to notify people before launch, you must continue to do so during and after launch

==Checkpoint: Launch==

==Post Launch Outreach==

Your continued outreach will involve messaging to your members and others on a regular basis through a number of means, depending upon your ability. You will develop a specific plan for your own organization. Below are ideas for outreach to member participants and non-member, potential participants. These are meant to help you to think about what you might do, but is not meant to be directive.

''Frequency and reach are important to grabbing the attention of participants:''
*You will need to spend time on outreach every week for the number of weeks you are trying to get people to take your survey. They need to hear about it from you, your partners, the doctors and clinics you work with, the media, their friends and family, their support group sources, other support organizations and anyone else who can help you to make sure they realize they need to take action.
''
''Outreach to member patients''

The following are many different communication methods you can use to reach your own membership. Use as many of them as possible. If possible, assign someone in your organization to be responsible for getting these messages out on a weekly schedule.

===Outreach to Member Patients===
====Social media, listservs, and other groups====
*On a Facebook fan page, you can pay to boost posts on others’ feeds
*Post a variety of messages that appeal to different people in different ways
*Post regular updates about your success in getting responses and, if possible, put a thermometer on your website that shows the number of people who have taken the survey against your goal number.
*Not everyone is connected to the Internet, so it may be beneficial to call your members and speak to them directly about your project. This way, if they have any questions you can answer them immediately.

====All types of mail====
*Send emails through Constant Contact or other email clients
*Send postcards to your members by regular mail.
*If you use an advocacy alert system, send out a message asking for involvement
*Newsletters

====Utilize thought leaders in your membership====
*Reach out to specific individuals, asking for their help because they are leaders in your group. Ask them to take the survey and post on your Facebook page or other groups about how easy it was and why it is important. Be sure to ask a variety of people to get involved.
*Ask leaders to speak briefly at your launch party.

''Ask members to help''
*Many of your members have blogs and Facebook pages chronicling their experience within your community. Reach out to your membership to ask who has such blogs and Facebook pages and ask them to post about your project, and to tag your page in the post.
*Many of your members are also on Twitter. Be sure to ask them to retweet your tweets.
*Ask members to forward your messages to members they know who do not stay connected to your group.
*Create a Youtube about your project and ask your members to share it.
*Ask members to forward your messages about the project to interested communities of which they belong (such as support groups).
*Add a feature on your website so that people can refer their friends after completing the survey.

====Face to Face and Cyber Engagement====
''In-person meetings & Webinars''
*The size of your organization will largely dictate your ability to engage with your members face to face.
*Smaller organizations: Bring a laptop or tablet to a meeting and help people to use the survey
*Organizations of any size: Give a conference presentation about the project and why it is important (we have created a Powerpoint presentation for you to use. You can give the presentation at a conference or in a Webinar).
*Conduct a webinar on the project, record it and post it to your Web page

''Videos and YouTube''

Some of your members have created compelling videos that are posted on your website and Youtube. If they are patient stories, obtain permission to use links to the stories in your messaging. Your organization may already have videos. You can also create new ones and ask your members to create some to include an appeal to take the survey.

===Outreach to non-members: How to Get the Word Out===

====Events====
Your organization can conduct events directly related to your project (Launch party, Schedule Day)
#Launch party – have an in-person or virtual launch party (or both at the same time). Invite your members and any local partners you may have. Give a short presentation and have some fun as well. Announce your event through a Facebook event so that all of your followers get an invitation or send out formal invitations for an in-person event. You can also do a creative online launch party on Twitter or Facebook.
#SCHEDULE Day - To address some of the concerns everyone has about members not having time to do the survey, schedule an “event” post-launch where you ask your members to SCHEDULE that day to do their survey. On that day, have volunteers from your organization available to answer questions about filling out the survey (navigators). You can obviously do more than one SCHEDULE day.

''Outreach to non-members (potential participants)''
Carry out recruitment events
*Health Fairs
*Expos
*Disability and Chronic Illness Conferences
*Resource Fairs
[[Note]]: Make sure you have methods to contact the person again!

Your organization can obtain a booth at the events or in some cases you may be able to send materials for resource fairs, etc. without having to attend in person. If you obtain a booth, insure that you have the ability to sign up and later contact anyone who might be interested in your project.

====Social media and listservs====

*On Twitter:
*#conduct a tweetchat and reach out to specific people who are interested in your subject material: be sure to use #hashtags so you can see how many people are picking up on those.
*#send an @ message with information about your project to influencers, support groups, hospitals, media, advocates and others
*# tweet your press release and send targeted @ messages to the media with the press release (use i-Newswire to increase visibility and excitement surrounding your press release (http://www.i-newswire.com/)
*#identify people on Twitter who have very large followings and ask them to retweet your message. They do not have to be people who are related to your condition. (To ask them, send them an @message or direct message through Twitter).
*On Facebook: reach out to similar groups and ask them to post information about your project on their page. Have them tag your group in the post so interested people can have a link to your Facebook page.
*On Instagram: creast an account where you can post photos promoting your project, and use hashtags. You can link your Instagram to your Facebook page so that anything you post on Instagram will also appear on your Facebook.
*On Youtube:
*#Create an account if you haven't yet
*#Upload a Youtube about your project. You can talk about why this project is important; provide stories about members and more. Your Youtube could become very useful in other social media as well because you can tweet it and post it on Facebook. (The videos you created from your guide videos and for your home page can also work.)
*Find other similar or interested groups on Yahoogroups, Googlegroups and others. Contact them about promoting your project

====Media: News Outlets====
*Send a press release at launch. Be sure to post it on your website so that you can link to it on social media.
*Identify bloggers and others who have written on your subject or who write about populations related to you.
*#Send them a written guest blog post or ask them to interview you for their blog.
*#Ask them to do a follow-up with information about your project.
*Consider creating a podcast that you can use for many different purposes. Here is information about how to do that. http://www.wikihow.com/Start-Your-Own-Podcast

====Blogs and other internet posts====
''Blogs and YouTube''
*Ask bloggers to post about your project
*Ask bloggers and YouTubers if you can use their stories in your outreach with links and credits

''Articles and blog posts describing your condition, organization, or topic of interest''
*Contact the author (usually listed within the article) and ask them to write another story about your condition and include information about your project
*Ask them to post a badge beside the article they already wrote
*Write a guest blog post for them that relates to the article they wrote with your project information in it
*If you cannot reach them, place a comment on their blog with a link to your project
*Contact the author of medical articles/papers and ask them to help with outreach to their patients

====Advertisements====

''Paid Advertisements''
*Ads or classifieds in newspapers – sometimes the smaller community newspapers are very inexpensive.
*Ads on other web sites, blogs
*On Facebook, Google, Yahoo, etc. These are usually charged on a per-click basis and you can set limits.
**Google Adwords (http://www.google.com/adwords/index.html?sourceid=awha&subid=us-en-ha-aw-bkup0~29971762445&gclid=CJ6n6_Osqb4CFcOBfgodAKwAvg)
***What are Adwords? Adwords is the overarching term for Google’s method of selling and running ads. Together, we will generate a list of “keywords” associated with your group and conditions. When one of our keywords is typed into a Google search field, google runs an automatic auction of all Adword users who have that keyword listed. Google then displays Advertisements (which you will also create), based on the order of this auction. You’ve probably seen these Ads when you are using Google products.
***Designing Keywords: Keywords should be both words and phrases
****Imagine what a patient might be searching for: When you sit down to Google, what do you type?
****Trend towards more specific words. Generic words like “headache” “rash” or “disease” are not effective
****Avoid “alphabet soup” and any in-house shorthand that most people won’t recognize
****Don’t forget “obvious” words, like the name of your organization and disease
**Facebook Advertising (https://www.facebook.com/advertising?campaign_id=194417723019&creative=36922363749&keyword=facebook+advertising&extra_1=793bcee9-b78e-32e8-820e-0000733859b4&extra_2=fbads)
**Yahoo Advertising (https://advertising.yahoo.com/)

''Unpaid Advertisements''
*Links on other Web pages
*Public Service announcements (one great place to get your announcer-read PSA’s on the air is at college campus radio stations. People in the local area and students listen to those stations. These stations are nonprofits and they are operated by students).
**Here is an example: http://www.kdur.org/ContactUs.aspx

===Outreach to non-members: Who to Spread the Word To?===

====Who to Target====

*Organizations, hospitals, clinics, doctors, online groups such as Yahoogroups and others who may have an interest in helping to promote your project.
*Affinity groups
**Partner channels – clinics, pharmacies, hospitals, specific support groups, similar organizations with which you already have a relationship or who you can connect with before launch
*For condition-specific groups
**Organizations dealing with some of the symptoms related to your condition such as vision loss, hearing loss, chronic pain, cancer, lung disease, seizures, paralysis, anemia, osteoporosis, diabetes, heart conditions, etc.
*Specific segments of society that may have a special connection to your disease or specialty such as Jewish groups, LGBTQ communities, minority groups, women’s organizations, organizations serving people from specific countries, immigrants
*Every day places and specific places where you might reach them:
**Libraries
**Grocery stores
**Salons
**Sports facilities
**Retirement communities
**Public health centers
**Therapists: massage, physical, speech, occupational, drug/alcohol, mental health (including community mental health centers)
**Natural health spas, acupuncturists, chiropractors
**Developmental disability service providers
**Schools or universities
**Courthouses, detention centers, and other government buildings
**Clubs and fraternal organizations such as Lions, Optimists, etc.
**Other types of nonprofit organizations, including foundations that fund
**Research, disability issues, etc.

====How to Engage Them====
*Print flyers and brochures for partners to hand to patients. There are many online printing sources that are inexpensive and easy to use such as www.gotprint.com.
*Use badges on their sites if they are willing
*Ask partners to:
**write an article for their newsletter about your project
**post your information on their Facebook pages, and tag your organization in the post.
**tweet about your project, and mention your organization
**For those who are new to social media:
***Mention = @XYZorganization
***You will see these mentions in your notifications on Twitter. Be sure to thank them.
*Ask your current members where they communicate outside of your group. Do they belong to other support groups or online forums?
*Ask them to help you to reach those groups or to post for you.

===Materials===
Here is a list of the materials that Genetic Alliance has modifiable templates for. In order to best reach out to your community and beyond, use these as samples and supplement them with other necessary documents. Some of these materials have been previously mentioned in the document.

If you have not done so already, '''branding''' is critical to member recognition of your organization and subsequently your mission

====Materials for Organization Employees / Genetic Alliance Use====
*Participant Tracking and Distribution
**Breaks down of the participant population by age, race/ethnicity, member retention.
**Crosses data types and sources with current and proposed data on network population, years collected, and percent captured electronically

*PEER Outreach Measurement
Tracks method of outreach (badge, rack card, Facebook, Twitter, etc), where and when the outreach took place, referral code used, message summary, and additional information

====Materials for Dissemination====
*Materials to send to clinics
**Flyers
**Brochures
**Rack Card
**Postcards

*To send to your community
**Sample First Launch Press Release
**Sample Email Blast

*To Media Outlets
**Sample First Launch Press Release (same as one sent to community members)

===Document Your Efforts===

Use the excel spreadsheet ('''PEER Outreach Measurements''') to document which methods of outreach do and do not work. Complete the word document ('''Participant Tracking and Distribution''') to better see who is taking the survey and what subsets of your community you must focus.

Track the number of impressions (number of people reached by each method of outreach) and conversions to help you understand what messaging is working.

====Complete the following in order to properly document your efforts====
*Create referral codes for each method of outreach (referral code format is shown below)
*Track tweet hashtags using Tweetreach (www.tweetreach.com) to track hashtags in tweets
*On Twitter, count your retweets and see how many people were reached through other Twitter accounts. (How many followers they have).
*On Facebook, count the number of likes another partner page has to gain an idea of how many people were reached.
*Number of articles and blog posts written about your project in various newsletters and media outlets and the corresponding number of impressions made. Be sure to post these on Facebook and Twitter when they are published to get the most traction.
*Track clicks through Constant Contact
*Use www.tinyurl.com. Track the number of clicks on those links through their site.
*Track website hits. If you don’t already have a method for this, try Google Analytics.
*Number of:
**Webinar attendees
**Members who received your emails or messages on Facebook (according to how many likes you have)
**People who say they will “attend” your schedule day
**People who attend your launch party
**Attendees at a specific event or the number of collateral materials you handed out.
*Send reports to '''Genetic Alliance on outreach progress''' (in first 10 days send daily reports, then weekly reports)
**How many members are signed up? (Total and since the last update)
**Distribution of survey takers (individuals filing it out for themselves? as a caregiver?)
**Most and least effective way to recruit participants

====Referral Codes====

You will assign codes to each site and method of outreach and you can also use different codes for different themes of messaging. For example, if you put a badge on a particular web site, there will be a code associated with that badge that will tell you which site they came from. But you can also use referral codes to identify which message themes are resonating with people. Prior to developing your messaging, think about what types of themes would motivate your members. Keeping themes of messages in mind, craft your messages and accompanying referral codes.
*Example: Message theme: “effective treatments” would have a different code than “family impact”

You can create special codes for:
*Badges – to show where the referrals were generated (i.e., a specific clinic)
*Twitter - use different codes for each type of messaging you use
*Constant Contact email messages – use different codes for each one you send so that you can tell which messages were most effective at getting people to actually complete the survey.
*Facebook posts – use different codes for each message theme.
*Flyers and brochures – use different referral codes for where they were used, if possible.
*Newsletter, postcards, etc. – mailings should have different codes to distinguish them from on another.

[[File:Referral Code.png|400px|thumb|center|Sample Referral Code]]

====Messaging====
Use different types of messaging to involve participants.

Tips:
*Your messaging should focus on “why” people should be involved, rather that “what.”
*Whenever possible, include a photo of, or an endorsement from, one of your organization leaders that members will recognize and trust.
*Messages to avoid:
**Anything that is not participant-centered. Appeal to them on a personal level.
**Too many acronyms or jargon within a message
**Negative messaging
**Long messages
*Measure which messages are impactful by keeping track of how many surveys were completed after you sent out a particular message (use tracking sheet)
*Incorporate participant. If you do not already have some, make a list of themes you want to have in your messaging for your project.
*Include patient stories as part of your messaging

====Troubleshooting====

'''Document lessons learned from your participants.''' This will benefit your participants and other organizations

Overcoming barriers
Some people struggle with technology or have questions while they are completing the survey. Develop ways to answer their questions such as:
*Skype sessions
*Training and utilizing navigators
*Being available by phone on certain days/times to answer questions
*Inviting members to email their questions and answering all questions received in an FAQ on your Web site, Facebook or any means that your members use regularly
*Webinars to explain and answer questions
*Conference calls to answer questions (document questions and answers and put them on your site in the form of an FAQ)
*Encouraging members who have these issues to invite a friend or family member to help them to fill out the survey
*Encouraging members to connect with other members through your Facebook group or other social media, and ask them about their experience with the survey
*In your survey, include a short question about users experience, and include these responses on your website. Address negative responses and give future users advice on how to avoid things that confused previous survey takers.

Anticipate “trust issues”
*You may need to craft some messages about why people can trust this project. You can also invite them to a webinar, tweetchat or Facebook discussion about it. Identify the root of their distrust (ie Internet security or lack of understanding technology)
*Mention that similar projects have benefitted other communities (i.e. Sickle Cell communities) OR the other disease advocacy organizations that are also participating to help gain trust.

====Sample Outreach Plan====

[[File:Sample_Outreach_Plan.jpg|400px|thumb|center|Sample Outreach Plan]]

==Research & Data==

To be updated...

==Additional Surveys & Updates==

To be updated...

==User Support==

'''Wayne (eventually)'''

Social Networking

2015-02-10T19:53:40Z

Advocacy Admin: /* 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. 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
/

==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.

==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]]