- 16:37, 5 March 2014 diff hist -22 Donations
- 16:36, 5 March 2014 diff hist -5 Donations
- 16:32, 5 March 2014 diff hist +9 People and Roles
- 16:25, 5 March 2014 diff hist -1 Medical Records current
- 16:24, 5 March 2014 diff hist +107 Medical Records
- 16:21, 5 March 2014 diff hist -9 Autopsies and Tissue Collection current
- 16:17, 5 March 2014 diff hist -129 Best Practices
- 16:12, 5 March 2014 diff hist 0 Social Networking
- 15:31, 5 March 2014 diff hist -53 Support for Individuals and Families
- 15:11, 5 March 2014 diff hist +23 Family Health History
- 15:06, 5 March 2014 diff hist -16 BioBanks
- 15:04, 5 March 2014 diff hist +6 Children's Hopes and Dreams Foundations
- 14:58, 5 March 2014 diff hist -15 Fundraising
- 14:55, 5 March 2014 diff hist -24 Fundraising
- 18:02, 4 March 2014 diff hist 0 N File:Edit button EDITED.jpg current
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- 17:58, 4 March 2014 diff hist 0 N File:Type info in this text box.jpg current
- 17:58, 4 March 2014 diff hist 0 N File:Create this page link EDITED.jpg current
- 17:57, 4 March 2014 diff hist 0 N File:Search engine EDITED.jpg current
- 16:37, 27 February 2014 diff hist 0 N File:Gabiobank.png current
- 16:21, 27 February 2014 diff hist 0 N File:Worksheet11.pdf current
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- 15:57, 27 February 2014 diff hist 0 N File:Third party event form.doc current
- 15:56, 27 February 2014 diff hist 0 N File:How to run an event 003.pdf current
- 15:50, 27 February 2014 diff hist 0 N File:AFTD Grant Rating.doc current
- 15:49, 27 February 2014 diff hist 0 N File:RFP Advice July 2008.doc current
- 15:21, 27 February 2014 diff hist 0 N File:Facebook Pages Insider's Guide.pdf current
- 15:14, 27 February 2014 diff hist -25 Tax and Finance →Internal Links current
- 15:13, 27 February 2014 diff hist 0 N File:Name4.png current
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- 15:09, 27 February 2014 diff hist 0 N File:Name2.png current
- 15:09, 27 February 2014 diff hist 0 N File:Name1.png current
- 15:06, 27 February 2014 diff hist -25 Bylaws and Articles →Internal Links
- 15:06, 27 February 2014 diff hist 0 N File:SampleConflictofInterest.doc current
- 15:05, 27 February 2014 diff hist 0 N File:Sample Conflict of Interest Policy.doc current
- 15:04, 27 February 2014 diff hist 0 N File:Board Member Conflict of Interest Policy.doc current
- 15:01, 27 February 2014 diff hist 0 N File:Chapter info Jan08.pdf current
- 15:01, 27 February 2014 diff hist 0 N File:International Partner Guide Oct08.pdf current
- 14:59, 27 February 2014 diff hist 0 N File:Worksheet12.pdf current
- 14:58, 27 February 2014 diff hist 0 N File:Worksheet1.pdf current
- 14:45, 27 February 2014 diff hist 0 N File:GeneticAllianceLogo.jpg current
- 02:08, 27 February 2014 diff hist 0 N File:Userlogin.png current
- 18:11, 26 February 2014 diff hist -25 Advisory Boards →Internal Links
- 18:09, 26 February 2014 diff hist -25 Developing a Governance Board →Internal Links
- 18:09, 26 February 2014 diff hist -25 Finding a Lawyer →Internal Links current
- 18:08, 26 February 2014 diff hist -25 Your Organization's Name Is Important →Internal Links
- 18:05, 26 February 2014 diff hist -25 Staff →Internal Links
- 18:05, 26 February 2014 diff hist -66 Staff →Bringing on Senior Management
- 18:04, 26 February 2014 diff hist +1,155 N Working Full-Time on Nonprofit Created page with "'''Joyce Graff, Executive Director, '''VHL Family Alliance''' "I made that shift in 2002, from being the volunteer leader of the organization to being the Executive Director ..." current
- 18:03, 26 February 2014 diff hist +3,478 N Audits Created page with ""Audit" means several things, the simplest of which is testing documentation or processes for accuracy and comprehensiveness against a report or a set of standards. The audit..."
- 18:03, 26 February 2014 diff hist +1,730 N Accountants Created page with "A variety of situations exist in which an organization might find an accountant useful. Some use one only on a yearly basis, others more often. They can also be employed as pa..."
- 18:02, 26 February 2014 diff hist +2,365 N Accepting Donations Created page with "In order to accept donations, you must first determine the forms of donations you will accept. Begin with the bank where your organization has its checking account, and consi..." current
- 18:02, 26 February 2014 diff hist +4,508 N Attaining 501(c)(3) Status (Not-For-Profit Determination) Created page with "Form 1023 is the IRS Application for Recognition of Exemption. A lawyer is not required in order to file Form 1023, although you may have had a lawyer involved in drawing up ..." current
- 18:01, 26 February 2014 diff hist +1,385 N State-Specific Issues Created page with "==Registering as a Charity== Organizations that wish to solicit donations regionally or nationally can visit this [http://www.multistatefiling.org/ website] for information a..." current
- 18:00, 26 February 2014 diff hist +2,023 N Financial and Summary Statement Created page with "Nonprofits must issue several types of financial statements on an annual basis (corresponding with the organization's fiscal year): *Statement of financial position (balance ..."
- 18:00, 26 February 2014 diff hist +8,513 N Setting up Useful Systems Created page with "You must set up useful systems for all of your financial needs. Not only will this save you time, but it will also save you money. Successful organizations are held to high ..." current
- 17:59, 26 February 2014 diff hist -25 Working Remotely
- 17:58, 26 February 2014 diff hist -25 Working with a Lawyer current
- 17:56, 26 February 2014 diff hist +3,489 N Celebrity Spokesperson Created page with "Who among us wouldn't love a celebrity to champion our cause? We wouldn't wish our condition, or a connection to it, on anyone, but we still dream about knowing a famous pers..." current
- 17:53, 26 February 2014 diff hist +2,342 N Media Access Created page with " ==Celebrity Spokesperson== Celebrities lend their names and their ability to attract publicity to many causes, paid and volunteer. If a celebrity has a personal connection..." current
- 17:53, 26 February 2014 diff hist +1,426 N Vision Created page with "Though most start-up organizations want to plunge right into fundraising, and indeed it might be prudent to seize an opportunity to do so, it is always a good idea to have a p..." current
- 17:47, 26 February 2014 diff hist +4,010 N Sharon F. Terry Created page with "Sharon F. Terry (born November 16, [http://en.wikipedia.org/wiki/1956/ 1956], is a social entrepreneur in the health advocacy sector. She founded PXE International, with her h..." current
- 17:39, 26 February 2014 diff hist +2,246 N Expertise Created page with "==Member Involvement and Outside Help== Individuals, organizations, and facilities that are connected directly to your organization can be considered inside resources. Outsi..." current
- 17:38, 26 February 2014 diff hist +1,510 N Mentors Created page with "A mentor is someone who offers advice about specific structures or functions (as opposed to actually performing tasks themselves). Mentors come in many forms and may be occas..." current
- 17:37, 26 February 2014 diff hist +2,623 N Leadership Created page with "Strong, focused leadership is the heart and soul of a new organization. Founding leaders are usually people with the time and resources to devote to setting up meetings, call..." current
- 17:37, 26 February 2014 diff hist +2,363 N Funding Created page with "If your condition is rare, you may think you will not be able to raise substantial funds. Or if your condition is common you may think it will be easy to raise money. There ..." current
- 17:36, 26 February 2014 diff hist +1,985 Why Go There? current
- 17:36, 26 February 2014 diff hist -61 Novel Meeting Formats current
- 17:34, 26 February 2014 diff hist +7,233 N Childcare Created page with "== Childcare for Conference Attendees == Many of our organizations organize Family Conferences where both affected an unaffected children are invited. Sometimes the affected ..."
- 17:34, 26 February 2014 diff hist +1,626 N Speaker selection and management Created page with "1. Thank you for agreeing to [describe presentation] on [date] from [time start] to [time end]. 2. (optional, but nice:) [speaker's] presentation fits into [organization..." current
- 17:32, 26 February 2014 diff hist +7,955 N Scholarships for your participants/families/members Created page with "'''In addition to reading below, also check out the Setting Up A National Conference page.''' ---- We're a small organization and our children's syndrome is rare... and ..." current
- 17:24, 26 February 2014 diff hist +1,414 N National Awareness Day Created page with "For rare genetic disorders, a day of awareness doesn't usually exist until a support group puts in time and effort into creating one. It can require a lot of hard work, resour..." current
- 17:22, 26 February 2014 diff hist +3,618 N Choosing Internet Service Provider Created page with "Your choice of an Internet service provider (ISP) is an important one. Examine your needs and shop around for a reliable host that fits your budget. The basic considerations..." current
- 17:22, 26 February 2014 diff hist +3,697 N Preparing for and Handling Publicity Created page with "We've had a few national features and there was a great difference in the response for each. The New York Times article that was published about our illness and organization ..." current
- 17:21, 26 February 2014 diff hist -35 Family Health History Initiative Guidelines current
- 17:20, 26 February 2014 diff hist +3,104 N Results and Individual Follow-up Created page with "==Is risk assessment included in the tool?== Risk assessment is an important factor for audiences to decide whether collecting family health history may be a good idea for the..." current
- 17:20, 26 February 2014 diff hist +7,565 N Additional/Supplemental Resources Created page with "==Treatments for conditions== Treatments for health conditions vary from condition to condition. They can range from simply taking a pill daily to receiving intensive care in..." current
- 17:19, 26 February 2014 diff hist +4,764 N Available Resources Created page with "==Is funding available for printing?== If your tool produces physical materials, you may need to consider where to draw money in order to print and distribute them. Grants ma..." current
- 17:19, 26 February 2014 diff hist +7,861 N Accessibility of Tools Created page with "==Is the tool available in the correct languages?== Knowing the background of your community members will help you determine if the tool is available in most or all of the lan..." current
- 17:18, 26 February 2014 diff hist +8,241 N Knowing Your Community Created page with "==How accessible are health care facilities?== If members of your community are unable to utilize the health care facilities in the area, they will be less likely to follow up..." current
- 17:18, 26 February 2014 diff hist +7,917 N Getting Your Community Interested Created page with "Once you have determined who your audience is and what your goals are, it's time to implement the initiative! But how do you get the members of your community to take an inte..." current
- 17:16, 26 February 2014 diff hist +6,277 N Intended Goal Created page with "Starting a broad family health history initiative in your community can be daunting. If you don't know where to begin, this section is the perfect place to get your bearings...." current
- 17:16, 26 February 2014 diff hist +1,369 N Family Health History Initiative Guidelines Created page with "The information here is based on a manual that the [http://www.geneticalliance.org/ws_display.asp?filter=fhh.coalition Coalition for Accessible Family Health History Tools] is..."
- 17:05, 26 February 2014 diff hist +4,781 N Registry Questionnaires Created page with "==Questionnaires== ===Registry Questionnaire Design and Data Standardization=== When developing a registry questionnaire, it is useful to incorporate standardized data colle..." current
- 17:04, 26 February 2014 diff hist +9,561 N Registry and Biobank Ethics and Governance Created page with "==Ethics and Governance== ===Research Ethics and Stewardship=== With any registry or biobank, you are conducting a research study, and research ethics are an important consi..." current
- 17:04, 26 February 2014 diff hist +7,643 N Obtaining and Maintaining Registry Data Created page with "==Evaluating Information== With any complex endeavor, such as a registry or biobank, we often gather information from multiple sources, including the Internet, journal articl..." current
- 17:04, 26 February 2014 diff hist +9,901 N Biobank Sample Collection Created page with "==Sample Collection== As you are planning your resource, you will to need determine if your collection will include biologic samples now or in the future. Collecting biologic..."
- 17:03, 26 February 2014 diff hist +5,345 N Biobank and Registry Financial Management Created page with "===Finances=== ====Developing a Budget==== As with any program initiative, it is important to develop a working budget. With a registry or biobank, it is essential to consi..." current
- 17:03, 26 February 2014 diff hist +19,047 N Biobank and Registry External Relations Created page with "==Utilizing Vendors and Partnerships== ===Vendor Selection=== Organizations with registries and biobanks typically work with vendors. It is unlikely that you will have the e..." current
- 17:03, 26 February 2014 diff hist +13,141 N Getting a Biobank or Registry Started Created page with "==Advocacy Organizations and Research Initiatives== The current system of academic research and rewards is fractured and unable to facilitate true collaboration and sharing. ..." current
- 17:02, 26 February 2014 diff hist +1,228 N Cool Tips Created page with "Let's put some cool techniques together so that we can use WikiAdvocacy more easily. == 25px + F == When you are looking for a specific phrase or word..." current
- 17:01, 26 February 2014 diff hist +4,037 N Getting Your Needs on Government and Legislative Agendas Created page with "==Alliances and Coalitions== Alliances and coalitions can bring many benefits back to your organization. They can offer visibility, yield networking opportunities, and creat..." current
- 17:00, 26 February 2014 diff hist +4,649 N Basic Formatting Created page with "You can edit any pages by clicking the edit tab at the top of the page. You need to use wiki syntax for: *'''bold''' *''Italic'' *'''''bold and Italic''''' *[[Internal Link]..." current
- 17:00, 26 February 2014 diff hist +3,405 N Research Model 3: Dominant Disorder Created page with ":Vicky Whittemore :Tuberous Sclerosis Alliance Research is performed by the advocacy organization together with the researcher(s). '''Mission''': The Tuberous Sclerosis All..." current
- 17:00, 26 February 2014 diff hist +499 N Creating New Pages Created page with "You can create new pages by using "[[ ]]". Making a new page is very easy. '''Example''' If you want to create a page called '''Example,''' do the following: *In the editi..." current
- 17:00, 26 February 2014 diff hist +3,906 N Research Model 2: Chromosomal Disorder Created page with ":Jannine Cody, Ph.D. :Founder, Chromosome 18 Research Registry :Chairperson, Genetic Alliance This model for the Chromosome 18 Registry and Research Society evolved after man..." current
- 16:59, 26 February 2014 diff hist +4,746 N Research Model 1: Recessive Disorder Created page with "Encouraging research on a particular condition is not impossible—given the right ingredients. However, unlike a deli counter, you can't take a number and wait until the res..." current
- 16:59, 26 February 2014 diff hist +2,036 N Overview of WikiAdvocacy Created page with "== Navigation Box (On the Left)== ;Main Page :The '''Main Page''' indicates the '''homepage''' of this site. We can go back to the Main Page '''by clicking the Main Page link'..." current
- 16:58, 26 February 2014 diff hist +4,746 N Promoting Research on a Condition Created page with "Encouraging research on a particular condition is not impossible—given the right ingredients. However, unlike a deli counter, you can't take a number and wait until the res..." current
- 16:57, 26 February 2014 diff hist +6,467 N Genetic Alliance BioBank Created page with "==Genetic Alliance BioBank Executive Summary== Image:gabiobank.png The [http://www.biobank.org Genetic Alliance BioBank] was founded in 2003 by leaders in the research a..."
- 16:57, 26 February 2014 diff hist +2,566 N Educating Your Membership about Research Created page with "Your organization may focus mainly on support activities or fundraising. Even if you don't plan to conduct studies of any kind, your membership may wish to learn about and pa..." current
- 16:56, 26 February 2014 diff hist +3,182 N Education of Members, Providers, and the Public Created page with "Advocacy organizations share information with more than their members. Particularly now that the web makes sharing information so much easier, an advocacy organization can be..." current
- 16:54, 26 February 2014 diff hist +2,925 N Protecting Message Boards from Spam Created page with "Organizations have faced issues with spam on their online forums and community message boards. Spam can come from either people or bots, so it is important to consider both wh..." current
- 16:53, 26 February 2014 diff hist +5,825 N Internet Services: Websites, Chat Rooms, and Newsgroups Created page with "Websites are discussed above, along with tips for choosing an ISP. ==Message Boards== Message boards are "threaded" online discussion forums where discussions can ensue with..." current
- 16:53, 26 February 2014 diff hist +14,875 N Internet Services: Mailing Lists Created page with "Internet services are important for advocacy organizations in the twenty-first century. They are relatively inexpensive services but critical ones for keeping the membership ..."
- 16:52, 26 February 2014 diff hist +2,107 N Advocacy Created page with "One of the functions of advocacy organizations, '''advocacy''' is explained in this section. ==Advocacy: Topics== *Getting Needs on Government and Legislative Agendas *[..." current
- 16:41, 26 February 2014 diff hist +5,107 N Using Search Tools to Get Found Created page with "You can be proactive about gathering new members via the Web. Make sure you are listed on all of the major databases on the Net. Genetic Alliance, NORD, Family Village, variou..." current
- 16:40, 26 February 2014 diff hist +6,397 N Internet and Web Resources Created page with "The Internet is probably the most valuable vehicle for gaining new members. There are a thousand techniques for using it effectively and beneficially. This guide will give y..."
- 16:36, 26 February 2014 diff hist +12,221 N Attending Professionals' Annual Meetings Created page with "Attending professional society meetings for the various specialties that your condition affects can be important for a number of reasons. You will learn more about the condit..." current
- 16:36, 26 February 2014 diff hist +762 N Start Using WikiAdvocacy Created page with "__FORCETOC__ == Register and Log in as a User== If this is your first visit to WikiGenetics, you should register as a user. Registering and logging in is not required, but it..."
- 16:35, 26 February 2014 diff hist +4,172 N Health care Providers and Specialists Created page with "Clinicians and specialists who deal with your condition can be very helpful. They can help you find affected individuals to become members. Clinicians cannot give you the na..." current
- 16:35, 26 February 2014 diff hist +3,489 N Recruiting Celebrities Created page with "Who among us wouldn't love a celebrity to champion our cause? We wouldn't wish our condition, or a connection to it, on anyone, but we still dream about knowing a famous pers..." current
- 16:34, 26 February 2014 diff hist +5,649 N Media Tips Created page with "When working with the media, keep the following tips in mind: ''There is no such thing as "off the record."'' "Off the record" means that you do not want a particular statem..." current
- 16:34, 26 February 2014 diff hist +270 N Editing Practice Created page with "==This is a practice page for editing== Feel Free to use this space for practice. == Internal Links == *Go back to Help: Contents *Start Using WikiAdvoca..." current
- 16:32, 26 February 2014 diff hist +4,181 N Planning a Research Conference Created page with "*Establishing the Planning Committee *Determining the parameters *Setting the agenda *Finding potential funding and applying **NIH R13 Conference Grant Mecha..." current
- 16:30, 26 February 2014 diff hist +3,857 N Patient's Bill of Rights Created page with "In 1997, President Clinton appointed an advisory commission to report on changes in the health care system and recommend measures to promote and assure health care quality and..." current
- 16:30, 26 February 2014 diff hist +12,595 N Orphan Drug Application Created page with "== The Orphan Drug Act == One of the largest obstacles to jump-starting research for a rare-disease drug therapy is the lack of financial incentive for the developer. Because..." current
- 16:29, 26 February 2014 diff hist +4,746 N Promoting Research Created page with "Encouraging research on a particular condition is not impossible—given the right ingredients. However, unlike a deli counter, you can't take a number and wait until the res..." current
- 16:29, 26 February 2014 diff hist +1,511 N Genetic Privacy Created page with "==HIPAA== [http://www.hhs.gov/ocr/hipaa/ The Health Insurance Portability and Accountability Act] includes some protections of fair and appropriate use of genetic information..." current
- 16:29, 26 February 2014 diff hist +1,328 N Getting Needs onto the Research Agenda Created page with "The most electrifying development in advocacy organizations for medical conditions is participating in, initiating, focusing and conducting research. Where organizations onc..." current
- 16:28, 26 February 2014 diff hist +5,346 N Funding Research by Others Created page with "What if you can't find anyone to work on your condition? There are very creative ways to encourage research on your condition. You can offer to work in the researcher's lab ..." current
- 16:28, 26 February 2014 diff hist +5,928 N Facilitating Quality Research Created page with "One of the primary reasons that advocacy organizations are formed is to find answers. If all the answers about treatment, management, and life with your condition were readil..." current
- 16:28, 26 February 2014 diff hist +2,566 N Educating Membership about Research Created page with "Your organization may focus mainly on support activities or fundraising. Even if you don't plan to conduct studies of any kind, your membership may wish to learn about and pa..."
- 16:27, 26 February 2014 diff hist +6,736 N Creating a Natural History Survey Created page with "Some organizations might want or need to create a family survey form to collect patient history information from their families. There are different ways you can create this t..." current
- 16:27, 26 February 2014 diff hist +4,087 N Consumers and Researchers: Making It Work Created page with "''Nancye Buelow was diagnosed with Alpha-1 (alpha-1 antitrypsin deficiency) in the spring of 1993 at the age of 40. She is presently the President of the Alpha-1 Association B..." current
- 16:26, 26 February 2014 diff hist +9,192 N Blood and Tissue Banks Created page with "A powerful way to consolidate your members' power to have an active role in research that truly benefits affected individuals is to create a repository for blood and tissue. ..."
- 16:25, 26 February 2014 diff hist +5,397 N Benefits of Collaboration with Advocacy Organization Community Created page with "There are creative examples of research studies whose protocol design, from the very beginning, encourage mutual commitment to, and shared responsibilities for, research tasks..."
- 16:25, 26 February 2014 diff hist +8,102 N Barriers to Rare Disease Research Created page with "From the Genetic Alliance's perspective, there are a number of significant, but not insurmountable, barriers to rare condition research: *Difficulty finding, enlisting and mai..."
- 16:24, 26 February 2014 diff hist +2,525 N Starting Points for Planning Materials Created page with "Many websites have a section called FAQ (frequently asked questions). Devised as introductions to the text-only discussions that preceded the web, these were simple collectio..." current
- 16:24, 26 February 2014 diff hist +825 N Publisher Recommendations Created page with "Now that you've created some great educational materials, where should you go to have them printed? Check out some of the recommendations below: *[http://www.gotprint.com Got..." current
- 16:23, 26 February 2014 diff hist +13,421 N Publicity and General Media Created page with "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 importa..."
- 16:23, 26 February 2014 diff hist +1,704 N Press Kits Created page with "A press kit may be among the first educational materials you assemble after families are connected to each other. It's listed last here because it will contain examples of th..." current
- 16:22, 26 February 2014 diff hist +10,938 N Newsletters and Bulletins Created page with "Newsletters and bulletins are likely to be the first materials an advocacy organization creates. Outside of physical meetings, newsletters are one of the simplest ways to sha..."
- 16:22, 26 February 2014 diff hist +2,103 N Medical Records Created page with "==Keeping a Copy of Your Records== Empowered patients are those who become active members of their healthcare team. Obtaining and keeping copies of medical your records inclu..."
- 16:21, 26 February 2014 diff hist +4,990 N Family Health History Created page with "''A peek into the past can reveal a lot about your future.'' Family health history is the story of diseases that run in your family. It is one part of the entire history of ..."
- 16:20, 26 February 2014 diff hist +2,639 N Clinician- and Researcher-Focused Materials Created page with "==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 you..."
- 16:20, 26 February 2014 diff hist +6,676 N Brochures and Fact Sheets Created page with "Brochures and fact sheets are typically an advocacy organization's first pieces to reach beyond organization membership. They also may be critical to disseminating accurate i..."
- 16:19, 26 February 2014 diff hist +2,036 N Articles, Letters, and Other Media for Lay Publication Created page with "Articles and letters in the lay media can create awareness of your condition, and that awareness can come back to you in many ways. It can reassure individuals with a connect..." current
- 16:19, 26 February 2014 diff hist +5,898 N Registries Created page with "Step by step start-up guide for registries and repositories This guide asks 53 questions about things to consider when creating a registry or repository. This guide is divide..."
- 16:19, 26 February 2014 diff hist +374 N Registry and Biobank Weekly Tips Created page with "Please visit the following pages for tips on how to manage a biobank and/or registry: *Getting a Biobank or Registry Started *Biobank and Registry External Relations ..."
- 16:18, 26 February 2014 diff hist +10,744 N Youth to Adult Transition Issues Created page with "Major life changes such as going to or from a school environment are a crucial issue for members of many advocacy groups. Here are some resources that may help individuals neg..."
- 16:18, 26 February 2014 diff hist +704 N Research Models Created page with "Research models are discussed in this section. *Research Model 1: Recessive Disorder *Research Model 2: Chromosomal Disorder *Research Model 3: Dominant Disorder ..." current
- 16:17, 26 February 2014 diff hist +8,559 N Support for Individuals and Families Created page with "==Support for Individuals and Families== Support for individuals and families takes many forms. The forerunners of today's advocacy organizations got their beginnings as supp..."
- 16:15, 26 February 2014 diff hist +19,515 N Social Networking Created page with "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 in..."
- 16:15, 26 February 2014 diff hist +1,420 N Translational Science Created page with "==Definition== Translational science is scientific research that aims to develop practical material to help people. The term is used mostly used in the health sciences for met..." current
- 16:15, 26 February 2014 diff hist +2,682 N Councils and Other Advisory Bodies Created page with "==Councils and Other Advisory Bodies== Agencies and other associations often have opportunities for members of the public or for health advocates to participate in committees ..." current
- 16:14, 26 February 2014 diff hist +12,001 N Setting Up A National Conference Created page with "National conferences are a great way to engage with people from all different areas who share a common interest. Many advocacy organizations hold annual national conferences a..."
- 16:14, 26 February 2014 diff hist +1,633 N Getting an ICD-9 code added for your condition Created page with "'''Why the organization is requesting a code'''--usually because there isn't a specific code and this makes it very difficult for researchers studying the disorder/disease to ..." current
- 16:14, 26 February 2014 diff hist +4,037 N Getting Needs on Government and Legislative Agendas Created page with "==Alliances and Coalitions== Alliances and coalitions can bring many benefits back to your organization. They can offer visibility, yield networking opportunities, and creat..." current
- 16:13, 26 February 2014 diff hist +3,468 N Resources for School Success Created page with "School can be overwhelming for anyone, but with a little extra planning, fears can be eased for children with special healthcare needs and genetic conditions. Check out some o..."
- 16:13, 26 February 2014 diff hist +4,648 N Informal Offices or Regional Support Groups Created page with "==Examples of Suggestions for Local/Regional Offices and Support Groups:== ===PXE International, Inc.=== PXE International, Inc.'s mission is two fold: to support patients and..." current
- 16:12, 26 February 2014 diff hist +3,056 N Protecting Member Privacy Created page with "Your work with individuals and families whose lives have been touched by genetic conditions naturally will lead you into situations you may not anticipate. For example, you m..." current
- 16:11, 26 February 2014 diff hist +5,421 N Phone Services: Going Beyond the Phone Tree Created page with "Back in the old days, everyone got a phone list, and a shortlist of people they were assigned to. When the big news came in, one person received it and called three people—..." current
- 16:11, 26 February 2014 diff hist +797 N Legislation and Policy Advocacy Created page with "==Legislative Reform== One way that an advocacy group can reach the public is by interacting with legislation to ensure better laws for the public. One example of this kind o..." current
- 16:11, 26 February 2014 diff hist +578 N Internet Services Created page with "==Internet Services: Topics== *Internet Services: Mailing Lists *Internet Services: Websites, Chat Rooms, and Newsgroups *Protecting Message Boards from Spam ==In..." current
- 16:11, 26 February 2014 diff hist +8,098 N National Institutes of Health (NIH) Created page with "==National Institutes of Health (NIH)== The NIH is one of the eight agencies of the Public Health Service, a part of the United States Department of Health and Human Services..." current
- 16:09, 26 February 2014 diff hist +4,196 N Policy Tools & Resources Created page with "==Policy Tools & Resources== One of the most important parts of advocacy is enacting policy. To do so, there are many methods of outreach that one may use to reach policymaker..." current
- 16:09, 26 February 2014 diff hist +3,877 N Dealing with Death Created page with "Organizations often struggle with how to provide for families who have lost a loved one to the condition and still offer hope to the families who are struggling to hang on to ..."
- 16:09, 26 February 2014 diff hist +3,135 N Advocacy Organizations List Created page with "*[http://www.aota.org/ American Occupational Therapy Association] :A professional organization of over 50,000 practitioners dedicated to providing services to individuals wit..." current
- 16:08, 26 February 2014 diff hist +977 N Connecting Organizations Created page with "Sometimes, advocacy organizations hope to improve and/or connect local organizations to form a larger network of support across the nation. One example of this is the [http://..." current
- 16:08, 26 February 2014 diff hist +1,701 N Advocacy Resources Created page with ";[http://www.usdoj.gov/crt/ada/ Americans with Disabilities Act (ADA) Home Page] :Information and Technical Assistance on the ADA :Phone: 800.514.0301 :Fax: 202.514.6193 ;[h..." current
- 16:08, 26 February 2014 diff hist +6,269 N Connecting Individuals Created page with "==International Contacts/Support Groups== The world is no longer divided with big barriers between countries. The Internet provides for all of us access to the whole world..."
- 16:07, 26 February 2014 diff hist +3,168 N Assistive Technology Created page with ";[http://www.abledata.com/ AbleData] :This website is part of the National Institute on Disability and Rehabilitation Research, US Department of Education. Provides informati..."
- 16:07, 26 February 2014 diff hist +2,725 N BioBanks Created page with "== Organizations == ;[http://www.biobankcentral.org/ BioBank Central] :Provides an overall description of biobanking including why biobanks are needed and how they work. :emai..."
- 16:05, 26 February 2014 diff hist +2,944 N Blogging Created page with "Blogging is a way for organizations to present information in an article or journal format. Blogging is used for a variety of topics, and it can also give site visitors the op..." current
- 16:05, 26 February 2014 diff hist +11,753 N Conferences, Workshops, and Meetings for Affected Individuals Created page with "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 commun..."
- 16:05, 26 February 2014 diff hist +3,535 N Children's Hopes and Dreams Foundations Created page with ";[http://www.believeintomorrow.org/ Believe in Tomorrow National Children's Foundation] :Helps children with life-threatening illnesses through three programs: Children’s Ho..."
- 16:03, 26 February 2014 diff hist +2,755 N Best Practices Created page with "Below is a list of resources for best practices. Each of these genetic disorders have best practices associated with them, however it is often hard to find all of the reliabl..."
- 16:03, 26 February 2014 diff hist +3,839 N Autopsies and Tissue Collection Created page with "Another difficult situation for families is deciding whether to make a loved one's body available for autopsy. Autopsy, once a routine practice in American medicine, is becom..."
- 16:02, 26 February 2014 diff hist -498 General Resources
- 16:02, 26 February 2014 diff hist +4,099 N Functions of Advocacy Organization Created page with "An advocacy organization can have a variety of functions, from an informal network in which parents give each other moral support to a sophisticated formal organization, which..."
- 16:00, 26 February 2014 diff hist +5,706 N Taking Credit Cards on the Web Created page with "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 y..."
- 16:00, 26 February 2014 diff hist +951 N Recruiting Created page with "In this section, we'll talk about the recruitment of various resources. == Topics == *Publicity and General Media *Media Tips *Recruiting Celebrities *Health ca..." current
- 15:59, 26 February 2014 diff hist +6,818 N People and Roles Created page with "An organization is made up of people, and those people take different roles. For those of you who have been running an organization for a while, especially if you've been doi..."
- 15:58, 26 February 2014 diff hist +830 N Novel Meeting Formats Created page with "Many advocacy organizations offer annual conferences and events for the individuals in their communities, which may include individuals with a genetic condition, their family ..."
- 15:57, 26 February 2014 diff hist +2,131 N Member Dues Created page with "Some organizations charge a substantial fee for membership and others charge nothing. Those that do charge use fees to offset the cost of services, and some believe there is ..." current
- 15:53, 26 February 2014 diff hist +4,747 N Consumer Medical Information Created page with ";[http://advocacyforpatients.org/ Advocacy for Patients with Chronic Illness, Inc.] :Free legal information, advice and advocacy services for patients with chronic illnesses i..."
- 15:52, 26 February 2014 diff hist +8,722 N Maintaining Your Membership Created page with "Organizations often report difficulty in maintaining membership, and this can be a source of disappointment or loss of momentum for an organization. You should not assume tha..." current
- 15:49, 26 February 2014 diff hist +1,520 N Maintaining Computer Files Created page with "==Backing-Up Files== Here are some reliable low cost solutions to back up your computer files off-site: *[http://www.carbonite.com/ Carbonite] – This "installs a small sof..." current
- 15:49, 26 February 2014 diff hist +3,157 N Emergency Preparedness Created page with "== Emergency Preparedness == Although September is emergency preparedness month, it is never too early or late to make sure you are prepared. Emergency readiness and disaster..." current
- 15:48, 26 February 2014 diff hist +3,618 N Choosing an Internet Service Provider Created page with "Your choice of an Internet service provider (ISP) is an important one. Examine your needs and shop around for a reliable host that fits your budget. The basic considerations..." current
- 15:48, 26 February 2014 diff hist +14,477 N Fundraising Created page with "==Project Types== Raising awareness: *Jewelry *Books *Template for Road Race fundraiser Donations: *online management *search engine donations *"Casual..."
- 15:48, 26 February 2014 diff hist +3,508 N How to Obtain Donated Office Space Created page with "== Deductibility == '''Partial Interest in Property''' Generally, you cannot deduct a charitable contribution of less than your entire interest in property. '''Right to u..." current
- 15:47, 26 February 2014 diff hist +6,150 N Helping Your Membership Help Your Group Created page with "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 ..."
- 15:46, 26 February 2014 diff hist +4,529 N Harnessing the Resources That Are Hard to Measure Created page with "Some of your greatest resources are intangible, and they range from special skills or insights in your members to recognizing an opportunity when it arises and making the most..." current
- 15:45, 26 February 2014 diff hist +4,875 N Fundraising Appeals Created page with "==About Appeals== Approaching and asking others for money may become vital or necessary, especially for developing or small organizations. The process is a slow buildup of sma..."
- 15:44, 26 February 2014 diff hist +4,830 N General Resources Created page with ";[http://www.TheArc.org/ The ARC of the US] :Provides services and advocates for children and adults with intellectual and developmental disabilities. :1010 Wayne Avenue, Suit..."
- 15:42, 26 February 2014 diff hist +2,058 N Information about Rare Genetic Diseases Created page with ";[http://www.geneticalliance.org/ Genetic Alliance] :The Disease InfoSearch section is especially resourceful. :4301 Connecticut Avenue, NW :Suite 404 :Washington, DC 20008 ..." current
- 15:37, 26 February 2014 diff hist +11,093 N Getting Grants Created page with "Grants are available from many sources, although most granting agencies, from the government to small family foundations, have some guidelines they follow. You will need to d..."
- 15:36, 26 February 2014 diff hist +1,143 N Matching Resources Created page with ";[http://www.birthdefects.org/ Birth Defect Research for Children, Inc.] :930 Woodcock Road, Suite 225 :Orlando, FL 32803 :Phone: 407-895-0802 :Email: staff@birthdefects.org ..." current
- 15:36, 26 February 2014 diff hist +2,521 N Meet Your Neighbors & Organizations Created page with "==Meet Your Neighbors== Meet Your Neighbors started as a Genetic Alliance webinar series to highlight organizations and their projects and resources. It has evolved into an el..." current
- 15:35, 26 February 2014 diff hist +1,647 N Financial Assets Created page with "Financial assets are a crucial component of any organization's success. When beginning to think about finances, it is important to first consider all financial resources by re..." current
- 15:35, 26 February 2014 diff hist +2,659 N Events Created page with "Events can run the gamut from being very labor intensive to being simple. They can also net a great deal or very little, after expenses. You might have multiple reasons for ..." current
- 15:34, 26 February 2014 diff hist +16,893 N Donations Created page with "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 foun..."
- 15:32, 26 February 2014 diff hist +2,848 N Publications Created page with ";[http://www.pbrookes.com/ Brookes Publishing Co.] :Collection of books that are resources on disabilities, education, and child development. :PO Box 10624 :Baltimore, MD 212..."
- 15:32, 26 February 2014 diff hist +3,053 N Resources for Nonprofits Created page with ";[http://www.alderconsulting.com/resources.html/ Alder Consulting] :"Technology on a Shoestring" series of resource articles for nonprofits. :488 14th Street :Brooklyn, NY 11..."
- 15:31, 26 February 2014 diff hist +2,788 N Conference Call Services Created page with "Often times organizations have individuals all across the country that need to stay in contact. While many times email can be used, sometimes you need to talk with one another..."
- 15:29, 26 February 2014 diff hist +1,893 N Sibling Support Created page with ";[http://www.nichcy.org/familiesandcommunity/pages/siblingissues.aspx/ National Dissemination Center for Children with Disabilities] :Resources and stories to help siblings of..."
- 15:29, 26 February 2014 diff hist +10 Charity Rating Listings current
- 15:29, 26 February 2014 diff hist +3,431 N State Registration Created page with "== Charitable State Registration == [http://www.nasconet.org/agencies National Association of State Charity Officials] The majority of states require registration of organiz..."
- 15:28, 26 February 2014 diff hist +3,140 N Travel Created page with ";[http://www.aa.com/i18n/AAdvantage/partners/charities/milesToKids.jsp/ AAdvantage: Miles for Kids in Need] :This program from American Airlines provides air transportation fo..." current
- 15:27, 26 February 2014 diff hist +2,879 N Individual Speaker Recommendations Created page with "As organizations and institutions begin planning for workshops and conferences, good speakers are always a necessary requirement! Please add in your suggestions for speakers b..." current
- 15:26, 26 February 2014 diff hist +1,916 N Charity Rating Listings Created page with "As a nonprofit organization, there are many different opportunities to have your organization rated by such groupss as The BBB Wise Giving Alliance, Charity Navigator, Standar..."
- 15:25, 26 February 2014 diff hist +15,117 N Building a Website Created page with "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 r..."
- 15:24, 26 February 2014 diff hist +2,830 N Becoming the Organization You Imagine Created page with "For a small organization, development can be a very daunting topic, probably because of all the baggage that money carries with it, sometimes, as individuals founding a new ..." current
- 15:22, 26 February 2014 diff hist +2,877 N Working with a Lawyer Created page with "Your organization should establish some kind of relationship with a lawyer from early on. A lawyer can help you review documents, ensure that you have the appropriate documen..."
- 15:21, 26 February 2014 diff hist +6,051 N Working Remotely Created page with "Many advocacy organizations start as a like-minded group of individuals who are willing to volunteer large amounts of time and effort to improve the situation of those affecte..."
- 15:11, 26 February 2014 diff hist +2,156 N Volunteers Created page with "You will draw your volunteers from your members and from the community at large. Your volunteer pool may include affected individuals and their families as well as people who..."
- 15:09, 26 February 2014 diff hist +614 N Tax and Finance Created page with "In this section, we'll talk about Tax and Finance for advocacy organizations. *Setting up Useful Systems *Financial and Summary Statement *State-Specific Issues *..."
- 15:09, 26 February 2014 diff hist 0 Staff →Job Postings
- 15:09, 26 February 2014 diff hist +3,645 N Staff Created page with "In the beginning, staff is often voluntary. But as the organization grows, the day to day needs grow as well. ==Bringing on Senior Management== *Media:A_New_Seat_at_the..."
- 15:07, 26 February 2014 diff hist +15,819 N Your Organization's Name Is Important Created page with "It may seem that this should not even warrant discussion. You can call your organization whatever you like, right? Yes and no. A name has strategic implications. Just as w..."
- 15:07, 26 February 2014 diff hist +994 N NAC Best Practices Created page with "NAC purpose: to provide advice and recommendations to project steering committees. *Invite NAC members. **If before grant submission, get Letter of Support from potential NAC..." current
- 15:06, 26 February 2014 diff hist +3,739 N International Offices Created page with "Due to the nature of several genetic disorders, even small to medium sized organizations may find it necessary to operate on the international level. Legal and logistical proc..."
- 15:03, 26 February 2014 diff hist +2,212 N Insurance and Policies Created page with "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 a..."
- 15:01, 26 February 2014 diff hist -74 Finding a Lawyer
- 14:59, 26 February 2014 diff hist +3,330 N Finding a Lawyer Created page with "Finding a pro-bono lawyer is not too difficult. It is often best to begin by asking for such assistance in your networks: church, temple, schools, neighborhood, etc. If you h..."
- 14:58, 26 February 2014 diff hist +4,348 N Ensuring Cultural Competence Created page with "As our population becomes more diverse, it is vital that individuals, organizations, communities, and healthcare providers understand the needs and ways of other cultures. =..."
- 14:58, 26 February 2014 diff hist +2,751 N Developing a Governance Board Created page with "==How Will You Motivate Them?== There are many reasons why individuals might choose to make a difference by supporting your organization and helping to guide it. Some of the..."
- 14:57, 26 February 2014 diff hist +4,942 N Bylaws and Articles Created page with "==Bylaws== Bylaws set out your mission and purpose and describe clear process for making policy decisions. They also prevent harm to your group, by providing a legal framewor..."
- 14:57, 26 February 2014 diff hist +7,420 N Advisory Boards Created page with "Each advocacy organization should have professionals providing some guidance to the organization on various matters. Genetic Alliance offers these guidelines for professiona..."
- 14:57, 26 February 2014 diff hist +3,483 N Developing the Organization That Can Achieve Your Goals Created page with "== Introduction == Every organization has its own culture and resulting style. Effective organizations can have different structures and perform many distinct functions. So..." current
- 14:56, 26 February 2014 diff hist +4,582 N Considering Starting a Support Group for a Condition that Already Has One? Created page with "When I am contacted by somebody who is interested in starting a disease association, I try to give them some ideas to ponder before they get started. In particular, I suggest ..." current
- 14:56, 26 February 2014 diff hist +2,011 N Compare Goals and Resources, with the Characteristics of the Condition Created page with "In this section we will examine the match between your goals and your resources. Often organizations capitalize on their readily available resources, and sometimes do not pur..." current
- 14:56, 26 February 2014 diff hist +1,426 N Characterize Resources Created page with "Organizations have many resources available to them, often within their own membership. In considering the following categories, consider nontraditional methods for obtaining..." current
- 14:55, 26 February 2014 diff hist +4,930 N Characterize Condition Created page with "Don't neglect the impact of the characteristics of the condition. Advocacy organizations often try to emulate what has been successful for another organization, especially in..." current
- 14:55, 26 February 2014 diff hist +5,465 N Determine Goals Created page with "What do you want to do, learn, and share? This can be as profound as saving your child from chronic illness, disability or death or as crucial as revitalizing your organizati..." current
- 14:54, 26 February 2014 diff hist +2,109 N Genetic Alliance Created page with "==About Us== Genetic Alliance is the world’s leading nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of..." current
- 14:54, 26 February 2014 diff hist +6,564 N The Kitchen Table Is a Good Place to Start: Klinefelter Syndrome and Associates Created page with "When our son was diagnosed with Klinefelter syndrome in 1988 we went to see a genetic counselor. Perhaps she was naive in assessing our family resources and ability to un..." current
- 14:51, 26 February 2014 diff hist +6,988 N History of Advocacy Organizations and Genetic Alliance Created page with "== Brief History of Self-Help Organizations == Voluntary genetic associations are rooted in the history of self-help organizations, going back to the mid-1800s. Structured se..." current
- 14:50, 26 February 2014 diff hist -1 Main Page
- 14:49, 26 February 2014 diff hist 0 Main Page
- 14:48, 26 February 2014 diff hist +2,509 N How to post a file on WikiAdvocacy Created page with "==Deciding Where to Post== Files and images can add a wealth of content to the wiki, but like any information, it's important to consider where it should be placed within the..." current
- 14:47, 26 February 2014 diff hist +2,139 N How to: Create a New Wiki Page Created page with "FIRST, make sure you are logged in to the wiki site!!! You will not be able to create a new page otherwise. If you do not already have a wiki account, creating one is free a..." current
- 14:46, 26 February 2014 diff hist +735 N Help:Contents Created page with "*Start Using WikiAdvocacy *Overview of WikiAdvocacy *Creating New Pages *Basic Formatting *Cool Tips *Editing Practice ==See Also (External Links)== ..." current
- 14:42, 26 February 2014 diff hist -631 WikiAdvocacy:Community Portal current
- 14:42, 26 February 2014 diff hist +1,045 N WikiAdvocacy:Community Portal Created page with "'''Community Portal''' is a place where you can post questions, suggestions, to do lists, and anything else you think is needed to enhance WikiAdvcacy. Everyone is encouraged..."
- 14:41, 26 February 2014 diff hist +1,571 N How to Get Started Created page with "==Editing WikiAdvocacy is Easy!== Editing WikiAdvocacy is very easy! Simply click the edit tab at the top of the page, type something in, and hit the “Save page” button a..." current
- 14:41, 26 February 2014 diff hist +2,926 N WikiAdvocacy:About Created page with " '''WikiAdvocacy''' is a communal resource for aiding advocacy. WikiAdvocacy was initially created by Genetic Alliance, and grows in value through the contributions of c..." current
- 14:40, 26 February 2014 diff hist +1,981 N How to Use This Guide Created page with " This guide is a resource for a range of organizations, from the very small kitchen-table group (or maybe just a thought in the mind of a parent) to an established organizatio..." current
- 14:39, 26 February 2014 diff hist +6,524 N Why Go There? Created page with "Do you really want to found, maintain, or work for an advocacy organization? If you are using this guide, then your answer to this question is obviously yes. But we pose the..."
- 20:26, 25 February 2014 diff hist +3,169 N The Power of Advocacy Organizations Created page with "Genetic advocacy organizations enlist the voices and engage the hearts of individuals and families who yearn for solutions, relief, services, treatments, and comfort. They ar..." current
- 20:25, 25 February 2014 diff hist +3,033 N Defining Our Terms Created page with "The field of advocacy has changed over the years. There are some practical applications of these changes, and the changes themselves have been challenging in some cases. Jus..."
- 20:24, 25 February 2014 diff hist +8,287 Main Page