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Diseases

Genetic and Rare Diseases Information Center (GARD)

Congenital myotonic dystrophy


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Research

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Patient Registry

  • In 2000,  the National Registry for Myotonic Dystrophy (DM) and Facioscapilohumeral Muscular Dystrophy (FSHD) was developed at the University of Rochester in Rochester, New York with funding from the National Institutes of Health (NIH). It was developed to facilitate research by making available to investigators anonymous data on Registry members, by helping investigators recruit subjects into their clinical studies, and by providing educational materials to patients and family members.
Related Diseases
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.