Dysferlin Registry

  • Learn about joining the dysferlin registry, what the registry provides to the community and how the community is preparing for clinical trials.
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  • Researchers can’t develop treatments without patient data. You can contribute by being involved and active in the Dysferlin Registry.
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  • You can make a difference by joining the Dysferlin Registry, participating in data studies and being active through this media.
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  • Find out about joining the Dysferlin Registry, receive an update on therapeutics in the pipeline for LGMD2B, or learn about studies: patients@jain-foundation.org
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Thank you for your interest in registering with the Dysferlin Registry. The Dysferlin Registry curates an international registry for people with dysferlinopathy. 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 dysferlin 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 and how to join.

 

Stronger together: featuring Brad Williams


Brad Williams is a member of the Jain Foundation team searching for a cure for dysferlinopathy (LGMD2B/Miyoshi Myopathy).  Brad was diagnosed with Miyoshi Myopathy in 1981 just as he was starting college. When asked what he would say to someone newly diagnosed with this disease, he replied:

Here are a few important points: 

  1. This disease doesn’t define you.
  2. You are still the same person you were.
  3. There will be challenges.
  4. You still have a future, and it’s worth planning for. 

You don’t need to miss out on life!

Brad Williams