Overview of Jain Foundation's Patient Registry

The Jain Foundation is urgently looking for patients who have been diagnosed with LGMD2B or Miyoshi.

Because this is a rare disease, the symptoms and disease progression in each patient are very important to improving our understanding of the disease. The Foundation’s goal is to advance scientific research and find a therapy for this disease as soon as possible. Through your participation, we can determine the true incidence of this disease and highlight its importance to scientists and clinicians worldwide. We are beginning to fund projects that will help with diagnosis efforts around the world (please click here for more information).

If you are a patient, PLEASE register here.

View our legal disclaimer before registering.

We are the only foundation, as far as we know, focusing on your disease (LGMD2B or MM). If you register, we will provide you with the following services:

i. Advice about gene sequencing options.

ii. Help finding appropriate experts on this disease (both scientific and clinical) in your country or area.

iii. Information about ongoing clinical trials that may be relevant to you.

Please also visit the Yahoo Discussion Group that was set up for LGMD2B / Miyoshi patients by Dr. Bradley Williams.

Our president Dr. Plavi Mittal recently gave an interview at Genethon, the French institute for orphan genetic diseases, describing the Jain Foundation's efforts toward a cure for LGMD2B/Miyoshi.