- 13:35, 24 December 2014 diff hist +405 Overview
- 13:29, 24 December 2014 diff hist +80 Overview
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- 21:53, 23 December 2014 diff hist -7 Overview
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- 21:51, 23 December 2014 diff hist +279 Overview
- 21:48, 23 December 2014 diff hist +33 Overview
- 21:46, 23 December 2014 diff hist +134 Overview
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- 21:42, 23 December 2014 diff hist -12 Overview
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- 21:21, 23 December 2014 diff hist +43 Overview
- 21:20, 23 December 2014 diff hist +12 Overview
- 21:19, 23 December 2014 diff hist -14 Overview
- 21:18, 23 December 2014 diff hist -3 Overview
- 21:17, 23 December 2014 diff hist +144 Overview
- 21:12, 23 December 2014 diff hist +72 Overview
- 21:10, 23 December 2014 diff hist 0 N File:IMG 20141208 120132.jpg current
- 21:09, 23 December 2014 diff hist 0 N File:IMG 20141208 120124.jpg current
- 21:08, 23 December 2014 diff hist +130 N File:IMG 20141208 120119.jpg Overall steps for PEER; still a Rough Draft PS: Based on old Redcap system, but just replace the Redcap section with the new PEER current
- 21:00, 23 December 2014 diff hist +62 Overview
- 20:48, 23 December 2014 diff hist +265 Overview
- 20:37, 23 December 2014 diff hist +19 Disease Advocacy Organization (DAO) Manual →Setting Up User Support System
- 20:35, 23 December 2014 diff hist 0 Disease Advocacy Organization (DAO) Manual →Survey Question sand Development
- 20:33, 23 December 2014 diff hist -1 PEER Portal current
- 20:32, 23 December 2014 diff hist +1 PEER Portal
- 16:53, 17 December 2014 diff hist -320 Main Page
- 16:41, 17 December 2014 diff hist -405 PEER Portal
- 16:38, 17 December 2014 diff hist +723 N PEER Portal Created page with "{|style="color:black;width:99%;background-color:#FAF6D9;font-weight:bold;border:1px solid #a3bfb1;" border="0" cellpadding="5" cellspacing="2" align="center" |'''GA PEER Porta..."
- 16:24, 16 December 2014 diff hist -121 Disease Advocacy Organization (DAO) Manual
- 16:22, 16 December 2014 diff hist +400 Disease Advocacy Organization (DAO) Manual
- 16:10, 16 December 2014 diff hist +849 N Disease Advocacy Organization (DAO) Manual Created page with "The following is the overview your DAO would have to take to successfully setup and launch a White Label Package connected through the PEER portal File:dao-manual.png|200px|..."
- 16:08, 16 December 2014 diff hist +3 Genetic Alliance(GA) SOP
- 16:07, 16 December 2014 diff hist 0 N File:Ga-sop-manual.png current
- 16:06, 16 December 2014 diff hist +849 N Genetic Alliance(GA) SOP Created page with "The following is the overview your DAO would have to take to successfully setup and launch a White Label Package connected through the PEER portal File:dao-manual.png|200px|..."
- 16:02, 16 December 2014 diff hist +1 Main Page
- 16:00, 16 December 2014 diff hist -16 Disease Advocacy Organization(DAO) Manual current
- 16:00, 16 December 2014 diff hist +16 Disease Advocacy Organization(DAO) Manual
- 15:51, 16 December 2014 diff hist -150 Disease Advocacy Organization(DAO) Manual
- 15:50, 16 December 2014 diff hist +63 Disease Advocacy Organization(DAO) Manual
- 15:49, 16 December 2014 diff hist 0 N File:Dao-manual.png current
- 15:46, 16 December 2014 diff hist +149 Disease Advocacy Organization(DAO) Manual
- 15:43, 16 December 2014 diff hist +116 Disease Advocacy Organization(DAO) Manual
- 15:38, 16 December 2014 diff hist +278 Disease Advocacy Organization(DAO) Manual
- 15:37, 16 December 2014 diff hist +184 Disease Advocacy Organization(DAO) Manual
- 15:33, 16 December 2014 diff hist -22,402 Disease Advocacy Organization(DAO) Manual Replaced content with "The following is the overview your DAO would have to take to successfully setup and launch a White Label Package connected through the PEER portal ==Initial Consultation ..."
- 15:33, 16 December 2014 diff hist +22,402 Donations
- 15:31, 16 December 2014 diff hist -22,402 Donations Replaced content with "The following is the overview your DAO would have to take to successfully setup and launch a White Label Package connected through the PEER portal ==Initial Consultation ..."
- 15:13, 16 December 2014 diff hist +22,539 Disease Advocacy Organization(DAO) Manual
- 15:12, 16 December 2014 diff hist -700 Disease Advocacy Organization(DAO) Manual
- 15:12, 16 December 2014 diff hist +293 Disease Advocacy Organization(DAO) Manual
- 15:11, 16 December 2014 diff hist +746 Disease Advocacy Organization(DAO) Manual →Obtaining Donations
- 15:11, 16 December 2014 diff hist -67 Disease Advocacy Organization(DAO) Manual →Obtaining Donations
- 15:11, 16 December 2014 diff hist +90 N Disease Advocacy Organization(DAO) Manual Created page with "==Obtaining Donations== :Mary Ann Wilson, Administrative Director :Neurofibromatosis, Inc."
- 19:22, 15 December 2014 diff hist -16 Main Page
- 18:19, 10 December 2014 diff hist -35 Overview
- 14:49, 10 December 2014 diff hist +73 N Overview Created page with "==What is this?== ==What REALLY is this?== ==But actually== ==Seriously=="
- 14:46, 10 December 2014 diff hist +35 Main Page
- 14:46, 10 December 2014 diff hist 0 Main Page →Request an Account
- 14:43, 10 December 2014 diff hist 0 Main Page
- 14:41, 10 December 2014 diff hist 0 Main Page
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- 14:37, 10 December 2014 diff hist -3 Main Page
- 14:35, 10 December 2014 diff hist -106 Main Page
- 14:34, 10 December 2014 diff hist +407 Main Page
- 14:34, 10 December 2014 diff hist -405 Main Page
- 14:33, 10 December 2014 diff hist -38 Main Page
- 14:32, 10 December 2014 diff hist +37 Main Page
- 14:30, 10 December 2014 diff hist +11 Main Page
- 14:28, 10 December 2014 diff hist +45 N Disease Advocacy Organization(DAO) Created page with "sdfghjkkcdfghjklkfdsdfghjhgfdsdfghjhgfdsdfghj" current
- 14:25, 10 December 2014 diff hist +14 Main Page
- 14:24, 10 December 2014 diff hist -431 Main Page
- 14:19, 10 December 2014 diff hist +812 Main Page
- 16:18, 8 December 2014 diff hist +1,831 Setting Up A National Conference →Registration Fees current
- 16:12, 8 December 2014 diff hist +1 Donations →Obtaining Donations
- 16:12, 8 December 2014 diff hist +1,735 Donations →Obtaining Donations
- 16:11, 8 December 2014 diff hist -1,734 Donations →Donation Software and Databases
- 16:10, 8 December 2014 diff hist +1,734 Donations →Donation Software and Databases
- 16:02, 8 December 2014 diff hist +2,312 Staff
- 15:23, 3 December 2014 diff hist +639 Conferences, Workshops, and Meetings for Affected Individuals
- 15:19, 3 December 2014 diff hist -638 Setting Up A National Conference
- 15:13, 3 December 2014 diff hist +638 Setting Up A National Conference
- 18:43, 1 December 2014 diff hist +261 International Offices
- 14:42, 18 November 2014 diff hist +399 Dealing with Death
- 19:03, 17 November 2014 diff hist +1,591 Dealing with Death →Supporting our Members During the Loss of a Loved One
- 17:19, 17 November 2014 diff hist +726 Getting Grants
- 15:48, 17 November 2014 diff hist +702 Building a Website →Factors to Consider
- 15:37, 17 November 2014 diff hist +6,080 Publicity and General Media →Pre Publicity Considerations
- 14:37, 12 November 2014 diff hist +707 Educating Membership about Research →Helping Members Decide Whether to Participate current
- 15:42, 10 November 2014 diff hist +1 Building a Website →Factors to Consider
- 15:42, 10 November 2014 diff hist +2,055 Building a Website →Factors to Consider
- 15:28, 10 November 2014 diff hist +2,330 Educating Membership about Research →Helping Members Decide Whether to Participate
- 17:23, 6 November 2014 diff hist +1,245 Dealing with Death
- 16:51, 6 November 2014 diff hist -2 Dealing with Death
- 15:52, 6 November 2014 diff hist +698 Publicity and General Media →Pre Publicity Considerations
- 18:47, 3 November 2014 diff hist +1,218 Support for Individuals and Families
- 18:29, 3 November 2014 diff hist +2,874 Helping Your Membership Help Your Group
- 19:59, 31 October 2014 diff hist -12 Dealing with Death
- 19:57, 31 October 2014 diff hist +544 Dealing with Death
- 17:58, 31 October 2014 diff hist +160 Dealing with Death
- 14:48, 31 October 2014 diff hist +808 Fundraising →Questions and Answers for New Orgs
- 14:46, 31 October 2014 diff hist +800 Your Organization's Name Is Important →Control of Your Logo and Name current
- 14:30, 31 October 2014 diff hist -48 Your Organization's Name Is Important →Control of Your Logo and Name
- 14:28, 31 October 2014 diff hist +48 Your Organization's Name Is Important →Control of Your Logo and Name
- 14:25, 31 October 2014 diff hist +897 Your Organization's Name Is Important →Control of Your Logo and Name
- 14:18, 31 October 2014 diff hist +1 Fundraising →Questions and Answers for New Orgs
- 14:18, 31 October 2014 diff hist +931 Fundraising →Questions and Answers for New Orgs
- 13:46, 29 October 2014 diff hist +30 Newsletters and Bulletins →Calendars current
- 13:45, 29 October 2014 diff hist -1,636 Brochures and Fact Sheets current
- 13:42, 29 October 2014 diff hist +45 Newsletters and Bulletins →Calendars
- 13:40, 29 October 2014 diff hist 0 Newsletters and Bulletins
- 13:39, 29 October 2014 diff hist +1,558 Newsletters and Bulletins
- 16:09, 28 October 2014 diff hist +1 Brochures and Fact Sheets
- 16:07, 28 October 2014 diff hist +1,634 Brochures and Fact Sheets
- 16:02, 28 October 2014 diff hist -1 Your Organization's Name Is Important →Joubert Syndrome & Related Disorders Foundation=
- 18:08, 8 May 2014 diff hist +2,689 Setting Up A National Conference
- 16:03, 8 May 2014 diff hist +1,520 Publicity and General Media
- 19:29, 7 May 2014 diff hist +8,451 N Internet Services: Listserv Guidelines Netiquitte Help Created page with "'''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 priva..."
- 19:18, 7 May 2014 diff hist +37 Internet Services: Mailing Lists →Internal Links current
- 19:17, 7 May 2014 diff hist +61 Internet Services: Mailing Lists →Internal Links
- 19:12, 7 May 2014 diff hist +4,299 Donations
- 19:08, 7 May 2014 diff hist +6,256 N FARA Patient Registry Q & A Created page with "'''What is the FARA Patient Registry?''' The purpose of the patient registry is to collect basic information on individuals with Friedreich’s Ataxia (FA) and to share this ..." current
- 19:07, 7 May 2014 diff hist +17 Registry and Biobank Weekly Tips current
- 19:06, 7 May 2014 diff hist +6,256 N FARA Q & A Created page with "'''What is the FARA Patient Registry?''' The purpose of the patient registry is to collect basic information on individuals with Friedreich’s Ataxia (FA) and to share this ..." current
- 19:03, 7 May 2014 diff hist +16 Registry and Biobank Weekly Tips
- 18:58, 7 May 2014 diff hist +33 Volunteer - Peer Coaches current
- 16:15, 7 May 2014 diff hist +4 Volunteer - Peer Coaches
- 16:14, 7 May 2014 diff hist +6,230 N Volunteer - Peer Coaches Created page with "Peer-Support Volunteer Training: Background: KS&A (soon to be AXYS) is a health advocacy organization dedicated to individuals who have genetic conditions called X and Y chro..."
- 16:13, 7 May 2014 diff hist +30 Volunteers →Internal Links
- 12:50, 6 May 2014 diff hist -348 Conference Call Services current
- 15:26, 11 April 2014 diff hist -1 Main Page →Request an Account
- 15:24, 11 April 2014 diff hist +32 Main Page →Request an Account
- 15:24, 11 April 2014 diff hist -46 Main Page
- 15:23, 11 April 2014 diff hist +46 Main Page
- 15:20, 11 April 2014 diff hist +168 Main Page →Request an Account
- 17:43, 9 April 2014 diff hist -73 Main Page →Request an Account
- 17:42, 9 April 2014 diff hist -6 Main Page →Request an Account
- 16:21, 7 March 2014 diff hist -1,124 Main Page
- 15:17, 6 March 2014 diff hist 0 Start Using WikiAdvocacy →Register and Log in as a User current
- 18:24, 5 March 2014 diff hist +44 Barriers to Rare Disease Research
- 18:22, 5 March 2014 diff hist +77 Resources for School Success
- 18:19, 5 March 2014 diff hist +3 Internet and Web Resources current
- 18:17, 5 March 2014 diff hist -11 Getting Grants
- 18:14, 5 March 2014 diff hist +5 Ensuring Cultural Competence
- 18:12, 5 March 2014 diff hist +4 Staff
- 18:07, 5 March 2014 diff hist +22 Assistive Technology current
- 18:05, 5 March 2014 diff hist -13 Blood and Tissue Banks
- 18:03, 5 March 2014 diff hist +45 BioBanks
- 18:01, 5 March 2014 diff hist -3 Children's Hopes and Dreams Foundations current
- 17:58, 5 March 2014 diff hist +108 Consumer Medical Information current
- 17:51, 5 March 2014 diff hist -37 Fundraising
- 17:50, 5 March 2014 diff hist +11 Fundraising Appeals current
- 17:49, 5 March 2014 diff hist -6 General Resources current
- 17:47, 5 March 2014 diff hist +9 Publications current
- 17:46, 5 March 2014 diff hist +14 Resources for Nonprofits current
- 17:43, 5 March 2014 diff hist -23 Sibling Support current
- 17:41, 5 March 2014 diff hist -97 State Registration
- 17:40, 5 March 2014 diff hist -8 State Registration
- 17:24, 5 March 2014 diff hist -193 Advisory Boards
- 17:02, 5 March 2014 diff hist -4 Bylaws and Articles current
- 16:58, 5 March 2014 diff hist -27 Ensuring Cultural Competence
- 16:57, 5 March 2014 diff hist -41 Ensuring Cultural Competence
- 16:55, 5 March 2014 diff hist -20 International Offices
- 16:53, 5 March 2014 diff hist -24 Staff
- 16:42, 5 March 2014 diff hist +6 Building a Website
- 16:39, 5 March 2014 diff hist +9 Conference Call Services
- 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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- 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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- 16:15, 27 February 2014 diff hist 0 N File:Worksheet3.pdf current
- 16:14, 27 February 2014 diff hist 0 N File:Worksheet2.pdf current
- 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