At a glance
Find trusted muscular dystrophy resources for patients and families, including information about symptoms and genetics, support and advocacy organizations, genetic counseling, developmental concerns, and guidance for living with and managing different types of muscular dystrophy.
Resources for patients and families
National Institutes of Health Genetics Home Reference
Learn about the signs and symptoms, genetic causes, and inheritance patterns of the different muscular dystrophies.
Muscular Dystrophy Association
A national nonprofit health agency that works to cure muscular dystrophy through research and provides health care, support services, advocacy and education.
Parent Project Muscular Dystrophy (PPMD)
A nonprofit organization focusing on Duchenne muscular dystrophy. PPMD funds research, raises awareness, promotes advocacy, connects the community, and broadens treatment options. PPMD has a series of care checklists to help families track each stage of Duchenne.
Cure Duchenne
An organization that provides the financial bridge to take the most promising research from the lab to human trials.
FSHD 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.
The Speak Foundation
An advocacy organization for people living with limb-girdle muscular dystrophy.
TREAT-NMD Neuromuscular Network
TREAT-NMD is a global network of experts in the neuromuscular field that develops tools that clinicians and scientists need to ensure that the most promising new therapies reach patients as quickly as possible.
National Society of Genetic Counselors
A professional association of genetic counselors. The website includes a searchable directory of genetic counselors.
Physical Developmental Delays: What to look for
A tool created for parents concerned about the physical development of their child.
The DMD Family Guide
Created by a group of non-profit organizations that work to improve the lives of people with DMD and their families, summarizes the content of the care considerations articles in a printable-booklet format. This guide is designed to give families detailed information on the medical care that individuals with DMD need at each stage of their lives.
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