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:
You don’t need to miss out on life!