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Advocacy Groups

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People living with Duchenne muscular dystrophy and those caring for them often want additional information and support. Finding an outlet for support is important. These organizations are often at the forefront of patient advocacy, the latest in concepts for care and research as well as family contact.

Helpful Links

  • 3E Love
    Accessibility awareness group

  • Able Newspaper
    Newspaper for, by, and about individuals with disabilities

  • Advocator Group
    Nationwide organization dedicated to helping individuals apply for and obtain Social Security benefits

  • The Assistance Fund
    Foundation that helps families facing high medical out-of-pocket costs by providing financial assistance for copayments, coinsurance, deductibles, and other health-related expenses
  • Association on Higher Education and Disability (AHEAD)
    Organization that provides conferences, workshops, publications and consultation to higher education personnel and works to address disability issues on college campuses

  • Ainsley’s Angels
    Organization that rents accessible chairs for marathon races

  • The Benevolent and Protective Order of the Elks of the United States of America

    Elks invest in their communities through programs that help children grow up healthy and drug-free, meet the needs of today’s veterans, and improve the quality of life. Some Elk State Associations provide services to individuals and families with disabilities. 

  • Best Buddies
    Best Buddies International is a nonprofit 501(c)(3) organization dedicated to establishing a global volunteer movement that creates opportunities for one-to-one friendships, integrated employment and leadership development for people with intellectual and developmental disabilities (IDD).
  • Duchenne Organizations
    The global list of Duchenne organizations from around the world
  • eParent

    eParent (Exceptional Parent) is a 45-year-old, award-winning publishing and communications company. eParent provides practical advice, emotional support and the most up-to-date educational information for families of children and adults with disabilities and special healthcare needs as well as to the physicians, allied health care professionals, and educational professionals who are involved in their care and development.

  • El Grupo Vida
    Disability information, referrals, and support groups for Spanish-speaking families 

  • Families USA Foundation

    Families USA Foundation is a nonprofit, nonpartisan, 501(c)3 organization that works to achieve high-quality, comprehensive, and affordable health care for all Americans.

  • Family Voices
    Family Voices is a national, nonprofit, family-led organization promoting quality health care for all children and youth, particularly those with special health care needs.
  • Living Beyond Boundaries

    Living Beyond Boundaries, Inc. is a charitable nonprofit organization dedicated to empowering the lives of individuals with disabilities nationwide. Founded by a member of the Duchenne community, Living Beyond Boundaries provides programs such as life coaching, open journey personal advancement opportunities, vocational training and job placements.

  • Mobility International USA

    Mobility International USA (MIUSA) is a disability-led non-profit organization headquartered in Eugene, Oregon, USA advancing disability rights and leadership globally. Website includes travel resources.

  • NMD United 
    Non-profit organization composed of adults living with neuromuscular disabilities. 

  • Patient Advocate Foundation

    Patient Advocate Foundation is a national 501 (c)(3) non-profit organization which provides professional case management services to Americans with chronic, life threatening and debilitating illnesses. PAF case managers serve as active liaisons between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters as they relate to their diagnosis also assisted by doctors and healthcare attorneys.

  • World Institute on Disability

    WID’s mission in communities and nations worldwide is to eliminate barriers to full social integration and increase employment, economic security, and health care for persons with disabilities. WID creates innovative programs and tools; conducts research, public education, training, and advocacy campaigns; and provides technical assistance

Looking for state-specific resources? Check out our state-specific page

What resources would you like to add or update?
Email your suggestions to resources@parentprojectmd.org!

 

While Parent Project Muscular Dystrophy (PPMD) strives to make the information on this website as timely and accurate as possible, PPMD makes no claims, promises, or guarantees about the accuracy, completeness, or adequacy of the contents of this site, and expressly disclaims liability for errors and omissions in the contents of this site. Reference in this site does not constitute endorsement or recommendation by PPMD. Click here to review PPMD’s policy on corporate support.

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