There is good support from our GSD3 coordinator, the Cori Action Support Team (CATS) and the GSD3 social media channel.
Social media for GSD3
There is a Facebook “closed” group for people with all types of GSD3. There are members around the world, although largely from English speaking areas such as UK, North America and Australia.
This is a peer-to-peer group of affected individuals and family members sharing their personal experiences related to GSD3. The information shared in this group must not be substituted for proper medical management.
AGSD-UK social media
Don’t forget that AGSD-UK has it’s own Facebook Page and a Twitter account. Click on the icons in the page footer, or go to our Social Media page.
International Association for Muscle Glycogen Storage Disease
IamGSD is a patient led body whose mission is to improve the lives of all those affected by the muscle GSDs. They have extensive information about McArdle’s on their web site and are trying to expand the information on the other muscle GSDs. They also produce a series of leaflets.