Adolescent Health Transition Project
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Diagnosis-Specific
 

Support Groups

supporting handsThere are several different types of groups organized to meet the needs or objectives of people with chronic illness or disability diagnoses. These include groups whose purpose is to provide support and information around a diagnosis, groups whose main function is policy advocacy or fund-raising and groups whose activities include combinations of these. The following list is categorized by their primary purpose. You can find additional groups or local chapters through the listings on the websites of major national organizations.

Self Advocacy
Groups that provide an opportunity for people with a common diagnosis to share experiences and to advocate for their rights.

  • Self Advocates Becoming Empowered (SABE)
    www.sabeusa.org
    National organization working for full inclusion of people with developmental disabilities in the community.

  • People First of Washington
    http://peoplefirstofwashington.org/about.html
    Local organization of SABE with chapters around the state. Materials available on website. Annual state convention.

  • Self Advocates in Leadership (SAIL)
    www.sailcoalition.org
    A statewide coalition on developmental disabilities that strives to shape public policies that affect the lives of people with DD. Monthly meetings, annual legislative agenda and advocacy events.

  • Kids As Self Advocates (KASA)
    http://fvkasa.org/index.php
    A national, grassroots project created by youth with disabilities for youth. ‘We are teens and young adults with disabilities speaking out. KASA knows youth can make choices and advocate for themselves if they have the information and support they need. We are leaders in our communities, and we help spread helpful, positive information among our peers to increase knowledge around various issues. We also help health care professionals, policymakers and other adults in our communities understand what it is like to live our lives and we participate in discussions about how to help each other succeed.

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Disability Advocacy - General
These groups focus broadly on disability advocacy.

  • The Arc of Washington State
    www.arcwa.org/index.htm
    Advocates for the rights and full participation of all people with developmental disabilities. State chapter focuses on policy advocacy and administers funding for programs such as Parent To Parent, Senior Family Caregivers, Caregiver training. Local chapters also provide services in their communities. Find local chapters and other information on state web page.

  • Partnerships for Action, Voices for Empowerment (PAVE)
    www.wapave.org
    PAVE is a parent-directed organization that works with families, individuals with disabilities, professionals and community members in all walks of life and with all types of disabilities. Links to a number of programs that come under the PAVE umbrella.

  • Family Voices of Washington
    www.familyvoicesofwashington.com/default.aspx
    Local chapter of national grassroots organization that advocates for health care services that are family-centered, community based, comprehensive, coordinated and culturally competent for all children and youth with special health care needs. Promotes families as decision makers at all levels of the health care system. Includes Family to Family Health Information Center.

  • Specialized Training of Military Parents (STOMP)
    www.stompproject.org
    STOMP is the only National Parent Training and Information Center for military families providing support and advice to military parents without regard of the type of medical condition their child has.

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This project is housed at the Center on Human Development and Disability (CHDD) at the University of Washington
Box 357920, Seattle, WA 98195-7920 | 206.685.1350 | Fax: 206.598.7815
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