- 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
- 16:18, 27 February 2014 diff hist 0 N File:Worksheet9.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
- 15:09, 27 February 2014 diff hist 0 N File:Name3.png current
- 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