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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 Genetic Alliance	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?
Organization Development: Organizational Structure Advisory Boards Bylaws and Articles Governance Board Ensuring Cultural Competence Finding a Lawyer Insurance and Policies International Offices NAC Best Practices Organization's Name Staff Tax and Finance Volunteers Working Remotely Working with a Lawyer	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 Internet Service Provider Maintaining Computer Files Maintaining Membership Meet Your Neighbors & Organizations Member Dues Novel Meeting Formats People and Roles Recruiting Taking Credit Cards on the Web
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 Protecting Member Privacy Regional Support Groups Resources for School Success Setting Up A National Conference Social Networking Support for Individuals and Families Youth to Adult Transition Issues	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
Functions of Advocacy Organization: RESEARCH Barriers to Rare Disease Research Benefits of Collaboration with Advocacy Organization Community Blood and Tissue Banks 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	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
Resources Advocacy Organizations List Advocacy Resources Assistive Technology BioBanks Blogging Children's Hopes and Dreams Foundations Consumer Medical Information Emergency Preparedness Fundraising Fundraising Appeals General Resources Information about Rare Genetic Diseases Matching Resources Meet Your Neighbors & Organizations Publications Resources for Nonprofits Sibling Support State Registration Travel	Speakers Bureau Genomics Forum Directory Individual Speaker Recommendations