About Us

About the Myotonic Dystrophy Family Registry

The Myotonic Dystrophy Family Registry (MDFR) is a web-based database of information provided by you to aid researchers in developing treatments for myotonic dystrophy and identifying participants for research studies and clinical trials. MDFR will also enable the Myotonic Dystrophy Foundation and others to review community-reported statistics and data about the experience of living with DM that will aid our advocacy and education efforts. By registering a profile and sharing information about your experience with DM you will provide critically-needed demographic, quality-of-life, and other information that will help investigators engaged in myotonic dystrophy research, and increase understanding of what it means to live with this disorder.

Because we respect and value your privacy, only de-identified (anonymous) information will be available. Your participation is entirely voluntary and your individual information is kept completely confidential. You’re always in charge of the information you provide and you can opt out of the registry at any time.

If you have any questions contact us via the information below:

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Who We Are

The Myotonic Dystrophy Foundation (MDF) manages and underwrites the Myotonic Dystrophy Family Registry. MDF is a non-profit advocacy and support organization focused on improving the quality of life of people living with this disease and maximizing research focused on finding DM treatments and a cure. We take our role as advocates for the myotonic dystrophy community seriously and are committed to increasing visibility and understanding of DM.

To learn more about MDF, visit www.myotonic.org or contact us via the information below:

Myotonic Dystrophy Foundation
663 13th Street, Suite 100
Oakland, CA 94612
E-mail: This e-mail address is being protected from spambots. You need JavaScript enabled to view it
Toll Free Phone: 86-MYOTONIC or 866-968-6642
Direct Phone: 415-800-7777