WikiAdvocacy wikiadvocacy https://wikiadvocacy.org/Main_Page MediaWiki 1.35.0 first-letter Media Special Talk User User talk WikiAdvocacy WikiAdvocacy talk File File talk MediaWiki MediaWiki talk Template Template talk Help Help talk Category Category talk 0 1 1108 996 2018-08-03T17:06:45Z Aguise 222 1108 wikitext text/x-wiki == 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 ---- {|style="background:white;color:black;width:100%;" border="0" cellpadding="5" cellspacing="2" align="center" |style="width:50%;background:#f5ffa;border:1px solid #cef2e0;color:black;align:center;vertical-align:top"| {|style="color:black;width:99%;background-color:#cef2e0;font-weight:bold;border:1px solid #a3bfb1;" border="0" cellpadding="5" cellspacing="2" align="center" |'''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]] |style="width:50%;background:#f5faff; border:1px solid #cedff2; color:black;align:center;vertical-align:top"| {|style="color:black;width:99%;background-color:#cedff2;font-weight:bold;bolder:1px solid #a3b0bf;" border="0" cellpadding="5" cellspacing="2" align="center" |''' 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']] |- |style="width:50%;background:#f5faff; border:1px solid #cedff2; color:black;align:center;vertical-align:top"| {|style="color:black;width:99%;background-color:#cedff2;font-weight:bold;bolder:1px solid #a3b0bf;" border="0" cellpadding="5" cellspacing="2" align="center" |'''[[Developing the Organization That Can Achieve Your Goals|Organization Development]]: Organizational Structure''' |} *[[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]] |style="width:50%;background:#f5faff;border:1px solid #cef2e0; color:black;align:center;vertical-align:top"| {|style="color:black;width:99%;background-color:#cef2e0;font-weight:bold;bolder:1px solid #a3b0bf;" border="0" cellpadding="5" cellspacing="2" align="center" |'''[[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]] |- |style="width:50%;background:#f5ffa;border:1px solid #cef2e0;color:black;align:center;vertical-align:top"| {|style="color:black;width:99%;background-color:#cef2e0;font-weight:bold;border:1px solid #a3bfb1;" border="0" cellpadding="5" cellspacing="2" align="center" |'''[[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]] |style="width:50%;background:#f5faff; border:1px solid #cedff2; color:black;align:center;vertical-align:top"| {|style="color:black;width:99%;background-color:#cedff2;font-weight:bold;bolder:1px solid #a3b0bf;" border="0" cellpadding="5" cellspacing="2" align="center" |'''[[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]] |- |style="width:50%;background:#f5faff; border:1px solid #cedff2; color:black;align:center;vertical-align:top"| {|style="color:black;width:99%;background-color:#cedff2;font-weight:bold;bolder:1px solid #a3b0bf;" border="0" cellpadding="5" cellspacing="2" align="center" |'''[[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]] |style="width:50%;background:#f5faff;border:1px solid #cef2e0; color:black;align:center;vertical-align:top"| {|style="color:black;width:99%;background-color:#cef2e0;font-weight:bold;bolder:1px solid #a3b0bf;" border="0" cellpadding="5" cellspacing="2" align="center" |'''[[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]] |- |style="width:50%;background:#f5ffa;border:1px solid #cef2e0;color:black;align:center;vertical-align:top"| {|style="color:black;width:99%;background-color:#cef2e0;font-weight:bold;border:1px solid #a3bfb1;" border="0" cellpadding="5" cellspacing="2" align="center" |'''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]] |style="width:50%;background:#f5faff; border:1px solid #cedff2; color:black;align:center;vertical-align:top"| {|style="color:black;width:99%;background-color:#cedff2;font-weight:bold;bolder:1px solid #a3b0bf;" border="0" cellpadding="5" cellspacing="2" align="center" |'''Speakers Bureau''' |} *[http://genomicsforum.org/?page=MDirectory Genomics Forum Directory] *[[Individual Speaker Recommendations]] eawcr2o9icwylynhpg8who2jf1h9lo7