Patient Registration

Thank you for your interest in registering with the Jain Foundation. The Jain Foundation has partnered with several other LGMD family foundations to offer free genetic testing for individuals suffering from muscular dystrophy to help them obtain a definitive and specific genetic diagnosis. 

Currently we are only able to offer the free genetic sequencing to individuals living in the United States.  However, we hope to eventually expand this program internationally.  Please follow the instructions below depending on where you live and whether or not you already have a genetic diagnosis for your muscular dystrophy.

If you live within the US, please visit and take the quiz to determine whether you are eligible for our new diagnostic program.



If you live in India, please contact in individuals listed here for assistance.


Although we are currently only able to offer our diagnostic program to those living in the US, we encourage you to take the eligibility quiz at, so that we can contact you quickly if we are able to expand internationally and offer free genetic sequencing in your country.


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 dysfelrin gene. If you have already been genetically diagnosed with mutation(s) in the dysferlin gene, please email us at and we will help guide you on how to help us obtain a copy of the relevant medical records.


When you are registered with the Jain Foundation, you will have access to the following services:



Because dysferlinopathy is a very rare disorder (estimated at 1-4 patients/million population), we are reaching patients globally to gather the numbers of patients necessary for future clinical trials. The world map below shows the distribution of the Jain Foundation registrants by country as it stands currently.



If you have a genetic diagnosis for one of the following muscular dystrophies, we would encourage you to join the appropriate disease specific registry. 


When you register with a disease specific registry, you may have access to the following services, depending on the registry:

  • General information about your disease
  • Help finding appropriate experts (both scientific and clinical) in your country or area
  • Information about ongoing or upcoming clinical trials relevant to your disease
  • A source of knowledge about treatment options that are under development


LGMD1B – caused by mutations in LMNA gene -


LGMD2A – caused by mutations in the calpain 3 gene -


LGMD2C – caused by mutations in the gamma sarcoglycan gene -


LGMD2D – caused by mutations in the alpha sarcoglycan gene -


LGMD2G – caused by mutations in TCAP gene -


LGMD2I – caused by mutations in the FKRP gene -


LGMD2K – caused by mutations in POMT1 gene -


LGMD2M – caused by mutations in FKTN gene –


LGMD2N – caused by mutations in POMT2 gene –


LGMD2O – caused by mutations in POMGnT1 gene –


Bethlem – caused by mutations in either  COL6A1, COL6A2, or COL6A3 genes -


EDMD – caused by mutations in either EMD, FHL1, SYNE1, SYNE2 or LMNA genes –


ISPD – caused by mutations in ISPD gene -


Duchenne or Becker Muscular dystrophy – caused by mutations in the DMD gene -


FSHD –caused by mutations in SMCHDI gene -


Hereditary Inclusion Body myositis (HIBM) – caused by mutations in GNE gene -


Pompe – caused by mutations in GAA gene -