About International Association for Muscle Glycogen Storage Disease (IamGSD)
In support of this RARE DAY, IamGSD will be launching two extraordinary opportunities:
(1) International PATIENT REGISTRY for all muscle GSDs. IamGSD has partnered with CoRDS at Sanford Research to develop a comprehensive patient-registry to capture anonymized information from participants living with a muscle GSD, including those who are undiagnosed and carriers
(2) GET MOVING CAMPAIGN GSD5 (McArdle Disease) is caused by mutations on the PYGM gene which is located on chromosome 11. With McArdle’s being one of the most common and well understood muscle GSDs, IamGSD is launching the GET MOVING campaign on RARE DISEASE DAY – which happens to be 11 weeks ahead of our 6th GLOBAL WALKING WEEK on May 16 – 22, 2020. During the 11 weeks, IamGSD will be encouraging everyone to GET MOVING one step at a time.