Key points
This page contains a list of muscular dystrophy resources for patients and families.
Resources for patients and families
Learn about the signs and symptoms, genetic causes, and inheritance patterns of the different muscular dystrophies.
A national nonprofit health agency that works to cure muscular dystrophy through research and provides health care, support services, advocacy and education.
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.
An organization that provides the financial bridge to take the most promising research from the lab to human trials.
A network of facioscapulohumeral muscular dystrophy patients, their families and researcher activists.
A national advocacy organization for people living with myotonic dystrophy.
A research and advocacy organization for people living with congenital muscular dystrophy.
An advocacy organization for people living with limb-girdle muscular dystrophy.
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.
A professional association of genetic counselors. The website includes a searchable directory of genetic counselors.
A tool created for parents concerned about the physical development of their child.
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.