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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 connect with other families familiar with or living with EDMD.

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GENETIC STUDY FOR EMERY-DREIFUSS MUSCULAR DYSTROPHY


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 pbkang@ufl.edu or 352-273-8921.