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== Request an Account ==
This is a community page and we encourage contribution from all, but due to excessive spamming, WikiAdvocacy requires confirmation that you are in fact a real person. If you created an account before March 1, 2014, you will need to create a new log in. Please send all account requests with your name and phone number to: info@geneticalliance.org
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|'''Introduction'''
|}
*[[Defining Our Terms]]
*[[The Power of Advocacy Organizations]]
*[[Why Go There?]]
*[[How to Use This Guide]]
*[[History of Advocacy Organizations and Genetic Alliance]]
*[[The Kitchen Table Is a Good Place to Start: Klinefelter Syndrome and Associates|The Kitchen Table Is a Good Place to Start]]
*[[Genetic Alliance]]
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|''' Assessment|Organizational Assessment '''
|}
*[[Determine Goals]]
*[[Characterize Condition]]
*[[Characterize Resources]]
*[[ Compare Goals and Resources, with the Characteristics of the Condition]]
*[[ Considering Starting a Support Group for a Condition that Already Has One?]]
*[[Challenges of 'Splinter Groups']]
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|'''[[Developing the Organization That Can Achieve Your Goals|Organization Development]]: Organizational Structure'''
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*[[Advisory Boards]]
*[[Bylaws and Articles]]
*[[Developing a Governance Board|Governance Board]]
*[[Ensuring Cultural Competence]]
*[[Finding a Lawyer]]
*[[Insurance and Policies]]
*[[International Offices]]
*[[NAC Best Practices]]
*[[Your Organization's Name Is Important|Organization's Name]]
*[[Staff]]
*[[Tax and Finance]]
*[[Volunteers]]
*[[Working Remotely]]
*[[Working with a Lawyer]]
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|'''[[Developing the Organization That Can Achieve Your Goals|Organization Development]]: Resources for Development'''
|}
*[[Becoming the Organization You Imagine]]
*[[Building a Website]]
*[[Charity Rating Listings]]
*[[Conference Call Services]]
*[[Donations]]
*[[Events]]
*[[Financial Assets]]
*[[Getting Grants]]
*[[Harnessing the Resources That Are Hard to Measure]]
*[[Helping Your Membership Help Your Group]]
*[[How to Obtain Donated Office Space]]
*[[Choosing an Internet Service Provider|Internet Service Provider]]
*[[Maintaining Computer Files]]
*[[Maintaining Your Membership|Maintaining Membership]]
*[[Meet Your Neighbors & Organizations]]
*[[Member Dues]]
*[[Novel Meeting Formats]]
*[[People and Roles]]
*[[Recruiting]]
*[[Taking Credit Cards on the Web]]
*[[Donations from Canada/Outside the US]]
|-
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|'''[[Functions of Advocacy Organization]]: SUPPORT'''
|}
*[[Autopsies and Tissue Collection]]
*[[Best Practices]]
*[[Conferences, Workshops, and Meetings for Affected Individuals]]
*[[Connecting Individuals]]
*[[Connecting Organizations]]
*[[Dealing with Death]]
*[[Internet Services]]
*[[Phone Services: Going Beyond the Phone Tree|Phone Services]]
*[[Protecting Member Privacy]]
*[[Informal Offices or Regional Support Groups|Regional Support Groups]]
*[[Resources for School Success]]
*[[Setting Up A National Conference]]
*[[Social Networking]]
*[[Support for Individuals and Families]]
*[[Youth to Adult Transition Issues]]
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|'''[[Functions of Advocacy Organization]]: EDUCATION'''
|}
*[[Articles, Letters, and Other Media for Lay Publication]]
*[[Brochures and Fact Sheets]]
*[[Clinician- and Researcher-Focused Materials]]
*[[Family Health History]]
*[[Medical Records]]
*[[Newsletters and Bulletins]]
*[[Press Kits]]
*[[Publicity and General Media]]
*[[Publisher Recommendations]]
*[[Starting Points for Planning Materials]]
*[[Webinars]]
|-
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|'''[[Functions of Advocacy Organization]]: RESEARCH'''
|}
*[[Barriers to Rare Disease Research]]
*[[Benefits of Collaboration with Advocacy Organization Community]]
*[[Blood and Tissue Banks]]
*[[Consumers and Researchers: Making It Work|Consumers and Researchers]]
*[[Creating a Natural History Survey]]
*[[Educating Membership about Research]]
*[[Facilitating Quality Research]]
*[[Funding Research by Others]]
*[[Getting Needs onto the Research Agenda]]
*[[Genetic Privacy]]
*[[Orphan Drug Application]]
*[[Patient's Bill of Rights]]
*[[Planning a Research Conference]]
*[[Promoting Research]]
*[[Registries]]
*[[Registry and Biobank Weekly Tips]]
*[[Research Models]]
*[[Translational Science]]
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|'''[[Functions of Advocacy Organization]]: ADVOCACY'''
|}
*[[Councils and Other Advisory Bodies]]
*[[Getting an ICD-9 code added for your condition]]
*[[Getting Needs on Government and Legislative Agendas]]
*[[Legislation and Policy Advocacy]]
*[[National Institutes of Health (NIH)]]
*[[Policy Tools & Resources]]
|-
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|'''Resources'''
|}
*[[Advocacy Organizations List]]
*[[Advocacy Resources]]
*[[Assistive Technology]]
*[[BioBanks]]
*[[Blogging]]
*[[Children's Hopes and Dreams Foundations]]
*[[Consumer Medical Information]]
*[[Emergency Preparedness]]
*[[Fundraising]]
*[[Fundraising Appeals]]
*[[Fundraising/Third Party]]
*[[Joint Fundraising]]
*[[General Resources]]
*[[Information about Rare Genetic Diseases]]
*[[Matching Resources]]
*[[Meet Your Neighbors & Organizations]]
*[[Nonprofit Organization Sample Templates]]
*[[Publications]]
*[[Resources for Nonprofits]]
*[[Sibling Support]]
*[[State Registration]]
*[[Travel]]
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|'''Speakers Bureau'''
|}
*[http://genomicsforum.org/?page=MDirectory Genomics Forum Directory]
*[[Individual Speaker Recommendations]]
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