What is the natural course of the disease?
What are the different variations caused by mutations in the EDMD linked genes?
What process and metrics should be incorporated to track quality of patient care?
Does a treatment lead to long term benefits or harm, including delayed complications?
In addition, the Registry will allow the researchers to contact patients
and in the event of clinical progress or relevant clinical research studies.
If you or a family member has EDMD, or mutation in a linked gene
without symptoms, you or family member may join the Registry.
Click here to join or access the Registry: https://www.sac-cu.org/EDMD
Please follow the link below to register your family or yourself today.
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