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This site is dedicated to the families and friends of people effected by Emery-Dreifuss Muscular Dystrophy. We want to build a global community to promote supportive communication and education for families, as well as tools to communicate and educate the medical community. Find us on Facebook and our Forum and connect with other families with or effected by EDMD.


Dr. Peter Kang is conducting a study on the genetic origins of various muscular dystrophies, including Emery-Dreifuss muscular dystrophy, and is open to enrolling subjects at the University of Florida College of Medicine.  

Participation will involve sharing medical records with the study team, as well as selected and optional donation of tissue samples.  Blood and urine samples may be collected for the study, but the only muscle tissues to be collected will be samples already obtained as part of a clinical muscle biopsy.  

Information discovered during the study cannot directly be reported to subjects and clinical care is not involved in the study, but genetic findings may be shared with clinical diagnostic laboratories to facilitate clinical confirmation of potentially relevant results.  

For more information, please contact:

Dr. Peter Kang at or 352-273-8921.

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I am very excited to bring you this announcement from the Jain-Foundation. I had the pleasure of speaking with the President & CEO of the foundation this past week about their wonderful program. They are offering free genetic testing to anyone with a suspected/undiagnosed muscle weakness. This program directly aligns with the genetic program Dr. Peter Kang is putting together.

Here is the announcement from them (Currently for US residents only and not limited to EDMD)

"We are excited to announce the release of a new diagnostic program for people with undiagnosed muscle weakness! Several LGMD family foundations created a new website: where undiagnosed individuals with a muscle problem can take a quiz to see if they qualify for free genetic sequencing, sponsored by our consortium of foundations. Physicians can also apply directly on behalf of their patients. Currently, only US residents are eligible for free sequencing but if the program is successful, they plan to expand internationally."

The Jain-Foundation has their own website where you can see how they are trying to help: