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

• 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).
• 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.
• 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!

 
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