More links and resources

ClinicalTrials.gov

ClinicalTrials.gov is a registry and results database of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial's purpose, who may participate, locations, and phone numbers for more details. This information should be used in conjunction with advice from health care professionals.

Muscular Dystrophy Association

The Muscular Dystrophy Association is the largest voluntary national association dedicated to neuromuscular diseases.

National Organization for Rare Disorders

The National Organization for Rare Disorders is a federation of voluntary health organizations helping people with rare diseases.

EURORDIS

The European Organization for Rare Diseases.

Muscular Dystrophy Campaign

The Muscular Dystrophy Campaign is the leading UK charity focusing on all muscle disease.