We are a patient-led international group encouraging efforts by research and medical professionals, national support groups and individual patients worldwide.
We have extensive information on our website, together with a range of publications and many videos on our YouTube channel, “IamGSD videos”.
National support groups
In many countries people affected by McArdle disease and other rare muscle glycogenoses are assisted by support groups for glycogen storage disease or muscular dystrophy. See our website for contact details.
These groups can provide information, put people in contact and issue newsletters. Some hold conferences and practical training courses.
Social media groups
The main social media group for McArdle disease is on Facebook. Search Facebook for “McArdle’s disease’”. It has over 2,500 members worldwide. There are also some smaller groups for special interests, such as parents and diet.
McArdle Disease Medical Overview