Information for Patients

These educational resources were designed to provide reliable information to patients about their disease and symptoms and to be an important resource for family members and health care professionals.

The resources or summaries featured on our website are either from the National Institutes of Health (NIH) or from researchers who have conducted or planned research utilizing the Registry. Information from these resources does not necessarily represent the views of the Registry, but, in general, fits with the goals of the Registry. We welcome past, present, and future collaborators to use the resources of the Registry to disseminate pertinent, educational information to patients.

The information on this website is not intended to replace medical information offered by physicians or other qualified health professionals. Users should review any information posted on this website or any other website with their physicians as needed.

Genetic Testing and Counseling

Genetics of Myotonic Dystrophy and FSHD

Medications in Muscular Dystrophy

Aging Well with Muscular Dystrophy