Patient & Physician Resources
Welcome to the Jain Foundation’s section for patients and physicians! We are the only foundation in the world focused specifically on dysferlinopathies, including Limb Girdle Muscular Dystrophy 2B (LGMD2B) and Miyoshi Myopathy (MM). The information provided in this section will help you understand the nature and cause of LGMD2B/Miyoshi Myopathy (collectively called the dysferlinopathies), find physicians knowledgeable in dysferlinopathy, laboratories that offer relevant diagnostic tests, and connect with supportive and helpful communities. Please visit the About Us page for a brief history of the foundation and read a letter from the President: State of the Foundation: A Short Update.
The Jain Foundation needs your help to urge individuals who have been diagnosed with LGMD2B or MM to contact us and join our patient registry. The patient registry is free and we do not raise money from patients.
Click on the links below for helpful and pertinent information.
Scientific information about the causes of dysferlinopathy and approaches to therapy development, written at a level accessible to non-scientists.
Clinical Studies and Trials
Summary of ongoing clinical studies and trials that may be of interest to dysferlinopathy patients.
A secure registry for dysferlinopathy patients maintained by the Jain Foundation.
Information on available diagnostic tests for dysferlinopathy, as well as common clinical and laboratory findings associated with this disease.
ALDA - Free Automated LGMD Diagnostic Assistant
The Jain Foundation has developed an online tool to help guide physicians by predicting the most likely type(s) of LGMD a patient may have based on clinical presentation and laboratory findings.
List of registered physicians with experience diagnosing dysferlinopathy patients.
Testimonials from patients describing the challenges faced, experience obtaining correct diagnosis, treatments tried and benefits of joining the Jain Foundation patient registry.
Links to places one can go to directly interact with dysferlinopathy patients, their families, and Jain Foundation staff to share experiences, information, and questions
Additional online resources for dysferlinopathy and other muscular dystrophy patients.