ORCHESTRATING A CURE FOR DYSFERLINOPATHY

The Jain Foundation is singularly focused on finding a cure for dysferlinopathy, also referred to as LGMD2B, LGMDR2, Miyoshi Myopathy 1

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ORCHESTRATING
A CURE FOR
DYSFERLINOPATHY

The Jain Foundation is singularly focused on finding a cure for dysferlinopathy, also referred to as LGMD2B, LGMDR2, Miyoshi Myopathy 1

LEARN MORE

WHAT IS DYSFERLINOPATHY?

LGMD2B/LGMDR2/MIYOSHI MYOPATHY 1

The Jain Foundation is exploring all avenues from 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.

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ARE YOU INCLUDED IN THE DYSFERLIN REGISTRY?

The Jain Foundation curates a global registry of individuals who are genetically confirmed with dysferlinopathy, also referred to as LGMD2B, LGMDR2, Miyoshi Myopathy 1, which will help our community mobilize fast for clinical trials.

REGISTER TODAY

ARE YOU
INCLUDED IN THE
DYSFERLIN REGISTRY?

The Jain Foundation curates a global registry of individuals who are genetically confirmed with dysferlinopathy, also referred to as LGMD2B, LGMDR2, Miyoshi Myopathy 1, which will help our community mobilize fast for clinical trials.

REGISTER TODAY

COS2 is NOW RECRUITING

The Clinical Outcome Study (COS2) is an opportunity for individuals with dysferlinopathy to participate in a clinical research study that aims to define outcome measures that are needed for the development and success of clinical trials. In additional this study will provide a better understanding of dysferlinopathy, ensuring that optimal care and treatment is being provided for people with this condition. The study is accepting 200 participants who are >9 years of age, and both ambulant and non ambulant individuals. COS2 involves 4 visits over 2 years and is occurring at 16 sites in 9 countries.

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COS2 is NOW RECRUITING

The Clinical Outcome Study (COS2) is an opportunity for individuals with dysferlinopathy to participate in a clinical research study that aims to define outcome measures that are needed for the development and success of clinical trials. In additional this study will provide a better understanding of dysferlinopathy, ensuring that optimal care and treatment is being provided for people with this condition. The study is accepting 200 participants who are >9 years of age, and both ambulant and non ambulant individuals. COS2 involves 4 visits over 2 years and is occurring at 16 sites in 9 countries.

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MAKING AN IMPACT

FUNDING MISSION CRITICAL PROGRAMS

120+

We carefully select and monitor research projects, studies and other programs to advance our mission

INVESTING
IN THE CURE

$35+M

Over 35 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

900+

We have identified over 900 genetically confirmed individuals with dysferlinopathy worldwide

MAKING AN IMPACT

FUNDING MISSION
CRITICAL PROGRAMS

120+

We carefully select and monitor research projects, studies and other programs to advance our mission

INVESTING
IN THE CURE

$35+M

Over 35 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

900+

We have identified over 900 genetically confirmed individuals with dysferlinopathy worldwide

MAKING AN IMPACT

FUNDING MISSION CRITICAL PROGRAMS

120+

We carefully select and monitor research projects, studies and other programs to advance our mission

INVESTING
IN THE CURE

$35+M

Over 35 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

900+

We have identified over 900 genetically confirmed individuals with dysferlinopathy worldwide