Neuromuscular Disorders

Patient Resources

ALS Association
Patient education, services and research

Congenital Muscle Disease International Registry

Cure CMD
Advocacy and education

Families of SMA
Support, services, education and research

Foundation and Registry for LGMD2B (Dysferlin) and LGMD2L (ANO5)

A Foundation Building Strength
Nemaline myopathy advocacy site

Friedreich’s Ataxia Research Alliance
Education and research

FSH Society
Education and research

Jain Foundation
Limb-Girdle 2B and Miyoshi patient registry and research

Joshua Frase Foundation
Myotubular myopathy, education and research

Kurt and Peter Foundation
Limb-Girdle 2C patient registry, advocacy and research

Limb Girdle MD
Limb-Girdle 2I, FKRP registry, advocacy and research

Limb Girdle Research Fund

Neuropathy Association
Support, education, advocacy and research

Muscular Dystrophy Association
Support, services, education and research

Myasthenia Gravis Foundation of America
Support, education and research

Myotonic Dystrophy Foundation
Support, education and research

North American Mitochondrial Disease Consortium
Support and research

Parent Project Muscular Dystrophy
Duchenne and Becker MD, education, advocacy, support and research

Resources for teens living with neuromuscular conditions

SMA Support Inc.
Grants and resources for families

United Mitochondrial Disease Foundation
Support and research

Stanford Medicine Resources:

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