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Organization name: Muscular Dystrophy Association
Purpose/mission: We provide programs and services that transform the lives of people affected by neuromuscular disease.
Population served: People affected by neuromuscular disease
Services/programs/resources offered:
MDA Care Center Network: Located at more than 150 of the top health care institutions across the United States, MDA Care Centers and Affiliates serve as the nexus for expert clinical care and medical research. Our Care Center Network offers tens of thousands of appointments each year for individuals living with muscular dystrophy, ALS and other neuromuscular diseases to access expert multidisciplinary care, clinical trials, and to connect with MDA and the neuromuscular community.
MDA Engage: We believe in the power of community and the importance of building relationships with families going through similar experiences. If you are an individual living with a neuromuscular disease, we invite you and your loved ones to attend our MDA Engage educational events taking place virtually.
MDA Resource Center: You don't have to navigate your neuromuscular disease journey alone – we’re here to help. The MDA Resource Center is available to provide one-on-one support via phone or email for individuals and families looking for information about the diseases in our program, services, activities and more.
Community Education: MDA has prepared resources and materials to help educate our community about the fundamentals of neuromuscular disease. New resources are always in development so please check back periodically to access more information, programs, and materials.
Young Adults Programs: We are committed to supporting you, a young adult, with resources, programming, and community connection as you move through high school, higher education, employment and independent living. MDA's peer-led initiatives create solutions for you to exceed limits and unleash your fullest potential.
Costs/requirements to participate:
No costs to access resources on website
Costs for care and programs vary; see website for more information
How families can access more information if interested in pursuing:
Contact info: resourcecenter@mdausa.org, MDA@mdausa.org, 800-572-1717
Nearby MDA Care Centers:
Lennox Baker Children's Hospital: Durham, 919-613-6832
UNC Hospitals Neurology Clinic: Chapel Hill, 919-966-9281
Baptist Medical Center: Winston-salem, 336-716-4101
Duke University Medical Center: Durham, 919-681-5176
Website: https://www.mda.org/
Social media sites:
Twitter: https://twitter.com/MDAorg
Facebook: https://www.facebook.com/MDAorg/
Instagram: https://www.instagram.com/mdaorg/