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.
Accessibility awareness group
Newspaper for, by, and about individuals with disabilities
Nationwide organization dedicated to helping individuals apply for and obtain Social Security benefits
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
Organization that rents accessible chairs for marathon races
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.
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 is a nonprofit, nonpartisan, 501(c)3 organization that works to achieve high-quality, comprehensive, and affordable health care for all Americans.
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 (MIUSA) is a disability-led non-profit organization headquartered in Eugene, Oregon, USA advancing disability rights and leadership globally. Website includes travel resources.
Non-profit organization composed of adults living with neuromuscular disabilities.
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.
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