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Resources for Patients and Families

Muscular Dystrophy Association
The national nonprofit health agency works to cure muscular dystrophy through research, and provides health care, support services, advocacy and education.

A toddler playing with a laptop computerTransitions Center
The Muscular Dystrophy Association’s website with education and career resources for teens and young adults.

Parent Project Muscular Dystrophy
Nonprofit focusing on Duchenne muscular dystrophy. PPMD funds research, raises awareness, promotes advocacy, connects the community, and broadens treatment options.

Duchenne Connect
Parent Project Muscular Dystrophy’s Duchenne/Becker muscular dystrophy resource community for clinical trials and treatment.

Cure Duchenne
An organization which provides the financial bridge to take the most promising research from the lab to human trials.

Facioscapulohumeral Muscular Dystrophy Society
A network of facioscapulohumeral muscular dystrophy patients, their families and researcher activists.

Myotonic Dystrophy Foundation
A national advocacy organization for people living with myotonic dystrophy.

Cure CMD
A research and advocacy organization for people living with congenital muscular dystrophy.

TREAT-NMD Neuromuscular Network
This European Union network for the neuromuscular field develops the tools that clinicians and scientists need to ensure that the most promising new therapies reach patients as quickly as possible.

United Parent Projects Muscular Dystrophy
This international organization of parents of children with Duchenne muscular dystrophy is dedicated to finding a cure, promoting standards of care, and informing parents around the world.

National Society of Genetic Counselors
A professional association of genetic counselors. Website includes a searchable directory of genetic counselors.

American Association on Health and Disability
A research, education, and advocacy organization working to prevent health complications in people with disabilities.

Resources for Healthcare Professionals
An online tool to help clinicians with the early identification of muscle weakness and neuromuscular disease.

American Academy of Neurology
A professional organization of neurologists who develop practice guidelines for the treatment and care of patients with muscular dystrophy.

A medical genetics information resource developed for health care providers and researchers. This site is a project of the National Center for Biotechnology Information, U.S. National Library of Medicine, National Institutes of Health.


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