WHAT IS DYSFERLINOPATHY?
LGMD2B/LGMDR2/MIYOSHI MYOPATHY 1
The Jain Foundation is exploring all avenues from the laboratory bench to bedside in the quest of identifying treatments for dysferlinopathy. Our innovative approach supports groundbreaking research, development of resources, diagnostic and educational programs, pre-clinical testing of promising treatments, and the development of tools needed to run successful clinical trials, such as a disease specific registry and outcome measures.
Through the collaborative effort of the many people involved in this effort, Jain Foundation staff, researchers, clinicians, patients, caregivers, regulatory agencies, and industry, we are driving real change for those with dysferlinopathy.
MAKING AN IMPACT
FUNDING MISSION CRITICAL PROGRAMS
150+
We carefully select and monitor research projects, studies and other programs to advance our mission
INVESTING
IN THE CURE
$45+M
Over 45 million dollars invested in research, drug development and patient support and education
WORKING TOWARDS
THE FUTURE
COS
Our Clinical Outcome Study (COS) and COS-PREPARED provide critical information for the design of clinical trials and standards of care
PREPARING THE COMMUNITY FOR TRIALS
1,300+
We have identified over 1,300 genetically confirmed individuals with dysferlinopathy worldwide
MAKING AN IMPACT
FUNDING MISSION
CRITICAL PROGRAMS
140+
We carefully select and monitor research projects, studies and other programs to advance our mission
INVESTING
IN THE CURE
$40+M
Over 40 million dollars invested in research, drug development and patient support and education
WORKING TOWARDS
THE FUTURE
COS
Our Clinical Outcome Study (COS) provides critical information for the successful design of clinical trials
PREPARING THE COMMUNITY FOR TRIALS
1,100+
We have identified over 1,100 genetically confirmed individuals with dysferlinopathy worldwide
MAKING AN IMPACT
FUNDING MISSION CRITICAL PROGRAMS
140+
We carefully select and monitor research projects, studies and other programs to advance our mission
INVESTING
IN THE CURE
$40+M
Over 40 million dollars invested in research, drug development and patient support and education
WORKING TOWARDS
THE FUTURE
COS
Our Clinical Outcome Study (COS) provides critical information for the successful design of clinical trials
PREPARING THE COMMUNITY FOR TRIALS
1,100+
We have identified over 1,100 genetically confirmed individuals with dysferlinopathy worldwide