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Accepting DonationsAccessibility of ToolsAccountants
Additional/Supplemental ResourcesAdvisory BoardsAdvocacy
Advocacy Organizations ListAdvocacy ResourcesArticles, Letters, and Other Media for Lay Publication
Assistive TechnologyAttaining 501(c)(3) Status (Not-For-Profit Determination)Attending Professionals' Annual Meetings
AuditsAutopsies and Tissue CollectionAvailable Resources
Barriers to Rare Disease ResearchBasic FormattingBecoming the Organization You Imagine
Benefits of Collaboration with Advocacy Organization CommunityBest PracticesBioBanks
Biobank Sample CollectionBiobank and Registry External RelationsBiobank and Registry Financial Management
BloggingBlood and Tissue BanksBrochures and Fact Sheets
Building a WebsiteBylaws and ArticlesCelebrity Spokesperson
Challenges of 'Splinter Groups'Characterize ConditionCharacterize Resources
Charity Rating ListingsChildcareChildren's Hopes and Dreams Foundations
Choosing Internet Service ProviderChoosing an Internet Service ProviderClinician- and Researcher-Focused Materials
Compare Goals and Resources, with the Characteristics of the ConditionConference Call ServicesConferences, Workshops, and Meetings for Affected Individuals
Connecting IndividualsConnecting OrganizationsConsidering Starting a Support Group for a Condition that Already Has One?
Consumer Medical InformationConsumers and Researchers: Making It WorkCool Tips
Councils and Other Advisory BodiesCreating New PagesCreating a Natural History Survey
Dealing with DeathDefining Our TermsDetermine Goals
Developing a Governance BoardDeveloping the Organization That Can Achieve Your GoalsDisease Advocacy Organization(DAO)
Disease Advocacy Organization(DAO) ManualDisease Advocacy Organization (DAO) ManualDonations
Donations from Canada/Outside the USDrug DevelopmentEditing Practice
Educating Membership about ResearchEducating Your Membership about ResearchEducation of Members, Providers, and the Public
Emergency PreparednessEnsuring Cultural CompetenceEvents
ExpertiseFARA Patient Registry Q & AFARA Q & A
Facilitating Quality ResearchFamily Health HistoryFamily Health History Initiative Guidelines
Financial AssetsFinancial and Summary StatementFinding a Lawyer
Functions of Advocacy OrganizationFundingFunding Research by Others
FundraisingFundraising/Third PartyFundraising Appeals
General ResourcesGenetic AllianceGenetic Alliance(GA) SOP
Genetic Alliance BioBankGenetic PrivacyGetting Grants
Getting Needs on Government and Legislative AgendasGetting Needs onto the Research AgendaGetting Your Community Interested
Getting Your Needs on Government and Legislative AgendasGetting a Biobank or Registry StartedGetting an ICD-9 code added for your condition
Harnessing the Resources That Are Hard to MeasureHealth care Providers and SpecialistsHelping Your Membership Help Your Group
History of Advocacy Organizations and Genetic AllianceHow to: Create a New Wiki PageHow to Get Started
How to Obtain Donated Office SpaceHow to Use This GuideHow to post a file on WikiAdvocacy
Individual Speaker RecommendationsInformal Offices or Regional Support GroupsInformation about Rare Genetic Diseases
Insurance and PoliciesIntended GoalInternational Offices
Internet ServicesInternet Services: Listserv Guidelines Netiquitte HelpInternet Services: Mailing Lists
Internet Services: Websites, Chat Rooms, and NewsgroupsInternet and Web ResourcesJoint Fundraising
Knowing Your CommunityLeadershipLegislation and Policy Advocacy
Main PageMaintaining Computer FilesMaintaining Your Membership
Matching ResourcesMedia AccessMedia Tips
Medical RecordsMeet Your Neighbors & OrganizationsMember Dues
MentorsNAC Best PracticesNational Awareness Day
National Institutes of Health (NIH)Newsletters and BulletinsNonprofit Organization Sample Templates
Novel Meeting FormatsObtaining and Maintaining Registry DataOrphan Drug Application
OverviewOverview of WikiAdvocacyPEER Portal
Patient's Bill of RightsPeople and RolesPhone Services: Going Beyond the Phone Tree
Planning a Research ConferencePolicy Tools & ResourcesPreparing for and Handling Publicity
Press KitsPromoting ResearchPromoting Research on a Condition
Protecting Member PrivacyProtecting Message Boards from SpamPublications
Publicity and General MediaPublisher RecommendationsRecruiting
Recruiting CelebritiesRegistriesRegistry Questionnaires
Registry and Biobank Ethics and GovernanceRegistry and Biobank Weekly TipsResearch Model 1: Recessive Disorder
Research Model 2: Chromosomal DisorderResearch Model 3: Dominant DisorderResearch Models
Resources for NonprofitsResources for School SuccessResults and Individual Follow-up
Scholarships for your participants/families/membersSetting Up A National ConferenceSetting up Useful Systems
Sharon F. TerrySibling SupportSocial Networking
Speaker selection and managementStaffStart Using WikiAdvocacy
Starting Points for Planning MaterialsState-Specific IssuesState Registration
Support for Individuals and FamiliesTaking Credit Cards on the WebTax and Finance
The Kitchen Table Is a Good Place to Start: Klinefelter Syndrome and AssociatesThe Power of Advocacy OrganizationsTranslational Science
TravelUsing Search Tools to Get FoundVision
Volunteer - Peer CoachesVolunteersWebinars
Why Go There?Working Full-Time on NonprofitWorking Remotely
Working with a LawyerYour Organization's Name Is ImportantYouth to Adult Transition Issues