Dysferlin Regsitry
The Dysferlin Registry is a free patient registry exclusively for individuals who have been genetically diagnosed with dysferlinopathy through the identification of mutations in the dysferlin gene. The Registry serves as an international recruiting tool for dysferlinopathy and general LGMD studies and trials. Members of the registry have the opportunity to connect with other patients as well as the Jain Foundation team. Inquiries and general questions about dysferlinopathy (LGMD2B/R2/Miyoshi Myopathy) are welcome!
Website:
https://dysferlinregistry.jain-foundation.org/#joining
Secondary Website:
http://www.jain-foundation.org/
Email Address:
Secondary Email Address:
Contact Number:
4258821440
Address:
9706 4th Avenue Northeast,
Seattle,
Washington
98115,
USA
Language(s) spoken
Primary language
- English
Geographical coverage
- International
TGDOC Membership
- TGDOC Affiliate Member Registry for LGMD
Data entry
- Patient Entered