Patients & Physicians

Welcome to the Jain Foundation’s site for patients and physicians! The Jain Foundation is the only foundation in the world focused specifically on dysferlinopathies, including Limb Girdle Muscular Dystrophy 2B (LGMD2B) and Miyoshi Myopathy (MM). We hope that the information provided in this section will help you better understand the nature and cause of LGMD2B/Miyoshi Myopathy (collectively called the dysferlinopathies), find physicians who are knowledgeable about dysferlinopathy and laboratory facilities that offer diagnostic tests for dysferlin, and connect with communities that you will find supportive and helpful.

If you are curious about how the Jain Foundation came to be and why we focus solely on dysferlinopathy, please visit the About Us page for a brief history of the foundation.

The Jain Foundation cannot accomplish its goal of finding a cure for LGMD2B/Miyoshi alone. We need you to stand with us in our efforts to reach dysferlinopathy patients by urging individuals who have been diagnosed with LGMD2B or MM to contact us and join our patient registry.

Below is a brief summary of the resources available for physicians and dysferlinopathy patients on the Jain Foundation site. Please click on the links for more information.

Learning Center
Scientific information about the causes of dysferlinopathy and approaches to therapy development, written at a level accessible to non-scientists.

Clinical Trials
Summary of ongoing clinical trials that may be of interest to dysferlinopathy patients.

Patient Registration
A secure registry for dysferlinopathy patients maintained by the Jain Foundation. Because this is a rare disease, the specific symptoms and disease progression experienced by each patient are important information that will improve our understanding of the disease. Through your participation, we can determine the true incidence of this disease and highlight its importance to scientists and clinicians worldwide. Please click the link above to learn more about the registry and about benefits that the Jain Foundation provides to registered patients.

Diagnostic Resources
Information on available diagnostic tests for dysferlinopathy, as well as common clinical and laboratory findings associated with this disease.

Physician Referrals
List of registered physicians with experience diagnosing dysferlinopathy patients.

Patient Stories
Testimonials from patients describing challenges they have faced, their experiences with obtaining a correct diagnosis, treatments they have tried, and the benefits of joining the Jain Foundation patient registry.

Patient Community
Description of the Yahoo Discussion Group for dysferlinopathy patients.

Helpful Links
Additional online resources for dysferlinopathy and other muscular dystrophy patients.