Patient Registration

The Jain Foundation free patient registry is now exclusively for individuals who have been genetically diagnosed with dysferlinopathy (LGMD2B and Miyoshi Myopathy) through the identification of mutation(s) in the dysferlin gene.

If you have been invited to join the registry, please fill out the registry questionnaire by clicking the “Next” button below. Please note that you cannot submit this form without using the link that was emailed to you.

If you have already been genetically diagnosed with mutation(s) in the dysferlin gene but have not yet been invited to join the registry, please email us at patients@jain-foundation.org and we will help guide you on how to help us obtain a copy of the relevant medical records that we need to confirm your eligibility. If you have not yet been genetically diagnosed, please visit www.LGMD-diagnosis.org to see if you qualify for free genetic diagnosis.