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== Getting started ==
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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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----
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{|style="background:white;color:black;width:100%;" border="0" cellpadding="5" cellspacing="2" align="center"
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|style="width:50%;background:#f5ffa;border:1px solid #cef2e0;color:black;align:center;vertical-align:top"|
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{|style="color:black;width:99%;background-color:#cef2e0;font-weight:bold;border:1px solid #a3bfb1;" border="0" cellpadding="5" cellspacing="2" align="center"
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|'''Introduction'''
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|}
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*[[Defining Our Terms]]
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*[[The Power of Advocacy Organizations]]
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*[[Why Go There?]]
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*[[How to Use This Guide]]
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*[[History of Advocacy Organizations and Genetic Alliance]]
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*[[The Kitchen Table Is a Good Place to Start: Klinefelter Syndrome and Associates|The Kitchen Table Is a Good Place to Start]]
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*[[Genetic Alliance]]
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{|style="color:black;width:99%;background-color:#cedff2;font-weight:bold;bolder:1px solid #a3b0bf;" border="0" cellpadding="5" cellspacing="2" align="center"
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|''' Assessment|Organizational Assessment '''
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|}
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*[[Determine Goals]]
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*[[Characterize Condition]]
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*[[Characterize Resources]]
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*[[ Compare Goals and Resources, with the Characteristics of the Condition]]
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*[[ Considering Starting a Support Group for a Condition that Already Has One?]]
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*[[Challenges of 'Splinter Groups']]
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|-
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{|style="color:black;width:99%;background-color:#cedff2;font-weight:bold;bolder:1px solid #a3b0bf;" border="0" cellpadding="5" cellspacing="2" align="center"
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|'''[[Developing the Organization That Can Achieve Your Goals|Organization Development]]: Organizational Structure'''
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|}
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*[[Advisory Boards]]
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*[[Bylaws and Articles]]
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*[[Developing a Governance Board|Governance Board]]
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*[[Ensuring Cultural Competence]]
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*[[Finding a Lawyer]]
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*[[Insurance and Policies]]
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*[[International Offices]]
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*[[NAC Best Practices]]
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*[[Your Organization's Name Is Important|Organization's Name]]
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*[[Staff]]
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*[[Tax and Finance]]
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*[[Volunteers]]
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*[[Working Remotely]]
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*[[Working with a Lawyer]]
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|style="width:50%;background:#f5faff;border:1px solid #cef2e0; color:black;align:center;vertical-align:top"|
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{|style="color:black;width:99%;background-color:#cef2e0;font-weight:bold;bolder:1px solid #a3b0bf;" border="0" cellpadding="5" cellspacing="2" align="center"
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|'''[[Developing the Organization That Can Achieve Your Goals|Organization Development]]: Resources for Development'''
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|}
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*[[Becoming the Organization You Imagine]]
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*[[Building a Website]]
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*[[Charity Rating Listings]]
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*[[Conference Call Services]]
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*[[Donations]]
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*[[Events]]
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*[[Financial Assets]]
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*[[Getting Grants]]
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*[[Harnessing the Resources That Are Hard to Measure]]
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*[[Helping Your Membership Help Your Group]]
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*[[How to Obtain Donated Office Space]]
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*[[Choosing an Internet Service Provider|Internet Service Provider]]
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*[[Maintaining Computer Files]]
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*[[Maintaining Your Membership|Maintaining Membership]]
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*[[Meet Your Neighbors & Organizations]]
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*[[Member Dues]]
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*[[Novel Meeting Formats]]
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*[[People and Roles]]
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*[[Recruiting]]
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*[[Taking Credit Cards on the Web]]
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*[[Donations from Canada/Outside the US]]
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|-
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|style="width:50%;background:#f5ffa;border:1px solid #cef2e0;color:black;align:center;vertical-align:top"|
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{|style="color:black;width:99%;background-color:#cef2e0;font-weight:bold;border:1px solid #a3bfb1;" border="0" cellpadding="5" cellspacing="2" align="center"
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|'''[[Functions of Advocacy Organization]]: SUPPORT'''
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|}
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*[[Autopsies and Tissue Collection]]
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*[[Best Practices]]
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*[[Conferences, Workshops, and Meetings for Affected Individuals]]
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*[[Connecting Individuals]]
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*[[Connecting Organizations]]
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*[[Dealing with Death]]
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*[[Internet Services]]
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*[[Phone Services: Going Beyond the Phone Tree|Phone Services]]
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*[[Protecting Member Privacy]]
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*[[Informal Offices or Regional Support Groups|Regional Support Groups]]
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*[[Resources for School Success]]
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*[[Setting Up A National Conference]]
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*[[Social Networking]]
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*[[Support for Individuals and Families]]
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*[[Youth to Adult Transition Issues]]
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|style="width:50%;background:#f5faff; border:1px solid #cedff2; color:black;align:center;vertical-align:top"|
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{|style="color:black;width:99%;background-color:#cedff2;font-weight:bold;bolder:1px solid #a3b0bf;" border="0" cellpadding="5" cellspacing="2" align="center"
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|'''[[Functions of Advocacy Organization]]: EDUCATION'''
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|}
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*[[Articles, Letters, and Other Media for Lay Publication]]
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*[[Brochures and Fact Sheets]]
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*[[Clinician- and Researcher-Focused Materials]]
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*[[Family Health History]]
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*[[Medical Records]]
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*[[Newsletters and Bulletins]]
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*[[Press Kits]]
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*[[Publicity and General Media]]
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*[[Publisher Recommendations]]
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*[[Starting Points for Planning Materials]]
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*[[Webinars]]
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|-
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{|style="color:black;width:99%;background-color:#cedff2;font-weight:bold;bolder:1px solid #a3b0bf;" border="0" cellpadding="5" cellspacing="2" align="center"
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|'''[[Functions of Advocacy Organization]]: RESEARCH'''
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|}
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*[[Barriers to Rare Disease Research]]
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*[[Benefits of Collaboration with Advocacy Organization Community]]
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*[[Blood and Tissue Banks]]
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*[[Consumers and Researchers: Making It Work|Consumers and Researchers]]
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*[[Creating a Natural History Survey]]
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*[[Educating Membership about Research]]
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*[[Facilitating Quality Research]]
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*[[Funding Research by Others]]
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*[[Getting Needs onto the Research Agenda]]
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*[[Genetic Privacy]]
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*[[Orphan Drug Application]]
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*[[Patient's Bill of Rights]]
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*[[Planning a Research Conference]]
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*[[Promoting Research]]
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*[[Registries]]
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*[[Registry and Biobank Weekly Tips]]
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*[[Research Models]]
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*[[Translational Science]]
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|style="width:50%;background:#f5faff;border:1px solid #cef2e0; color:black;align:center;vertical-align:top"|
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{|style="color:black;width:99%;background-color:#cef2e0;font-weight:bold;bolder:1px solid #a3b0bf;" border="0" cellpadding="5" cellspacing="2" align="center"
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|'''[[Functions of Advocacy Organization]]: ADVOCACY'''
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|}
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*[[Councils and Other Advisory Bodies]]
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*[[Getting an ICD-9 code added for your condition]]
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*[[Getting Needs on Government and Legislative Agendas]]
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*[[Legislation and Policy Advocacy]]
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*[[National Institutes of Health (NIH)]]
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*[[Policy Tools & Resources]]
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|-
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|style="width:50%;background:#f5ffa;border:1px solid #cef2e0;color:black;align:center;vertical-align:top"|
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{|style="color:black;width:99%;background-color:#cef2e0;font-weight:bold;border:1px solid #a3bfb1;" border="0" cellpadding="5" cellspacing="2" align="center"
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|'''Resources'''
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|}
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*[[Advocacy Organizations List]]
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*[[Advocacy Resources]]
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*[[Assistive Technology]]
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*[[BioBanks]]
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*[[Blogging]]
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*[[Children's Hopes and Dreams Foundations]]
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*[[Consumer Medical Information]]
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*[[Emergency Preparedness]]
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*[[Fundraising]]
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*[[Fundraising Appeals]]
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*[[Fundraising/Third Party]]
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*[[Joint Fundraising]]
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*[[General Resources]]
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*[[Information about Rare Genetic Diseases]]
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*[[Matching Resources]]
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*[[Meet Your Neighbors & Organizations]]
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*[[Nonprofit Organization Sample Templates]]
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*[[Publications]]
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*[[Resources for Nonprofits]]
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*[[Sibling Support]]
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*[[State Registration]]
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*[[Travel]]
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|style="width:50%;background:#f5faff; border:1px solid #cedff2; color:black;align:center;vertical-align:top"|
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{|style="color:black;width:99%;background-color:#cedff2;font-weight:bold;bolder:1px solid #a3b0bf;" border="0" cellpadding="5" cellspacing="2" align="center"
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|'''Speakers Bureau'''
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|}
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*[http://genomicsforum.org/?page=MDirectory Genomics Forum Directory]
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*[[Individual Speaker Recommendations]]

Latest revision as of 17:06, 3 August 2018


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



Introduction
Organizational Assessment
Organization Development: Organizational Structure
Organization Development: Resources for Development
Functions of Advocacy Organization: SUPPORT
Functions of Advocacy Organization: EDUCATION
Functions of Advocacy Organization: RESEARCH
Functions of Advocacy Organization: ADVOCACY
Resources
Speakers Bureau