What you should know about the MDA

What you should know about MDA

Polymyositis, Dermatomyositis and Inclusion Body Myositis are classified as neuromuscular diseases. In the US these diseases fall under the Muscular Dystrophy Association (MDA), a nonprofit organization which advocates for people with neuromuscular diseases including research, drug development, and clinical trials.

MDA financially supports 200 medical institutions in the US to host MDA clinics. The clinics are commonly operated by the neuromuscular department at teaching hospitals using a multi-disciplinary approach, often including pulmonologists, physical and occupational therapists, cardiologists, dieticians, genetic counselors, physiatrists, psychologists, social workers, speech pathologists, and MDA representatives.

Each clinic differs in what it offers. To find out more about what is covered at your local clinic, contact the MDA office in your area. Locate an MDA office closest to you: http://www.mda.org/locate.

Membership to MDA is free and its benefits include:

  • A subscription to Quest Magazine, a quarterly MDA publication which can be a valuable resource,
  • Assisting with the cost of repairs of durable medical equipment,
  • Helping locate durable medical equipment from its lending closet,
  • Providing free flu vaccines,
  • Conducting ongoing public health education programs through webinars, educational speakers, seminars, videos and newsletters,
  • Helping individuals mobilize a personal support network through myMuscleTeam, a program that helps recruit and coordinate in-home help

Other countries have Muscular Dystrophies organizations including:

Australia: http://mdaustralia.org.au/

New Zealand: https://www.google.com/search?q=muscular+dystrophy+new+zealand&ie=utf-8&oe=utf-8

Canada: http://muscle.ca/

UK: http://www.musculardystrophyuk.org/

Europe: http://www.eamda.eu/

India: https://www.omprakash.org/volunteer-abroad-asia/volunteer-in-india/Muscular-Dystrophy-Foundation-India

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Myositis Support and Understanding Association (MSU) is a patient-centered, all-volunteer 501(c)(3) nonprofit organization Empowering the Myositis Community. Founded by Myositis patients, for Myositis patients, MSU provides education, support, advocacy, access to research and clinical trial matching, and need-based financial assistance.

View more information: Myositis Support

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