HOW TO TAKE ACTION

Dysferlin Registry

HOW TO TAKE ACTION

Dysferlin Registry

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The Dysferlin Registry

Thank you for your interest in registering with the Dysferlin Registry. The Dysferlin Registry is an international registry for people with dysferlinopathy, also referred to as LGMD2B, LGMDR2, Miyoshi Myopathy 1. The registry is the main point of contact for patients when requesting information, education about the disease, participation in forums and learning about studies and trials.

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 DYSF gene.

In addition, the Dysferlin Registry has the potential to serve as an international recruiting tool for dysferlinopathy and general LGMD studies and trials.

Have a look at the Dysferlin Registry landing page to find out more about how it works.

If you are interested in joining, you can complete the secure application below and once we receive it we will contact you with the next steps.

DYSFERLIN REGISTRY APPLICATION