From WikiAdvocacy

WikiAdvocacy is a free, reader-built guide, as well as a community for advocacy. It covers every aspect of founding and growing an advocacy organization from fundraising to detailed explanations of issues, skills, and the elements of creating a registry and samples repository.

If this is your first time visiting WikiAdvocacy, we recommend reading About WikiAdvocacy and How to Get Started. We also recommend checking out the community portal and help pages.

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[edit] Directory

[edit] 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

[edit] 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?

[edit] Organization Development

[edit] Organizational Structure

Organization's Name -- Governance Board -- Bylaws and Articles -- Advisory Boards -- Tax and Finance -- Finding a Lawyer -- Working with a Lawyer -- Volunteer Committee -- Staff

[edit] Resources for Development

Helping Your Membership Help Your Group -- Recruiting -- Internet Service Provider -- Conference Call Services -- Maintaining Membership -- Taking Credit Cards on the Web -- Becoming the Organization You Imagine -- Getting Grants -- Donations -- Charity Rating Listings -- Member Dues -- Events -- Celebrity Spokesperson -- People and Roles -- Harnessing the Resources That Are Hard to Measure -- Preparing for and Handling Publicity -- How to Obtain Donated Office Space -- Building a Website --Meet Your Neighbors & Organizations

[edit] Functions of Advocacy Organization

[edit] Support

Support for Individuals and Families -- Youth to Adult Transition Issues -- Conferences, Workshops, and Meetings for Affected Individuals -- Connecting Individuals -- Internet Services -- Phone Services -- Protecting Member Privacy -- Dealing with Death -- Autopsies and Tissue Collection

[edit] Education

Starting Points for Planning Materials -- Newsletters and Bulletins -- Brochures and Fact Sheets -- Articles, Letters, and Other Media for Lay Publication -- Clinician- and Researcher-Focused Materials -- Press Kits -- Publisher Recommendations

[edit] Research

Getting Needs onto the Research Agenda -- Educating Membership about Research -- Patient's Bill of Rights -- Genetic Privacy -- Promoting Research -- Funding Research by Others -- Barriers to Rare Disease Research -- Consumers and Researchers -- Benefits of Collaboration with Advocacy Organization Community -- Facilitating Quality Research -- Research Models -- Blood and Tissue Banks -- Tips on Posting Requests for Research Proposals‎

[edit] Advocacy

Getting Needs on Government and Legislative Agendas -- National Institutes of Health (NIH) -- Councils and Other Advisory Bodies -- Getting an ICD-9 code added for your condition

[edit] Resources

Advocacy Resources -- Advocacy Organizations List -- Meet Your Neighbors & Organizations -- Assistive Technology -- BioBanks -- Children's Hopes and Dreams Foundations -- Consumer Medical Information -- Fundraising -- General Resources -- Information about Rare Genetic Diseases -- Matching Resources -- Publications -- Resources for Nonprofits -- Sibling Support -- State Registration -- Travel

[edit] Initiatives

Family Health History

[edit] State Pages