
These groups—many founded by parents within the rare disease community—help connect patients and families to education, research, and support services. Here are just a few of the organizations that work to raise both awareness of rare diseases and funds directed toward research while supporting their communities.
Muscular Dystrophy Association

Parent Project Muscular Dystrophy

Cure Duchenne

Jett Foundation

Little Hercules Foundation

Team Joseph

Charley’s Fund

Hope for Gabe

Joining Jack

Duchenne UK

Cure Spinal Muscular Atrophy

Friedreich’s Ataxia Research Alliance

MTM CNM Family Connection

Joshua Frase Foundation

Barth Syndrome Foundation

Canavan Foundation

Chasing Connor’s Cure

Asociación Española de Enfermos de Pompe

Cure Congenital Muscular Dystrophy

Charcot-Marie-Tooth Association

National Ataxia Foundation

United Mitochondrial Disease Foundation (UMDF)

Myasthenia Gravis Foundation of America

RYR-1 Foundation
