There is good support from our GSD3 coordinator, the Cori Action Team Support (CATS) and the GSD3 social media channel.
AGSD-UK social media
There is information and support available online for people affected by GSD. In addition to this website, AGSD-UK also have a Facebook page, and Instagram and Twitter accounts.
Follow us on our social media channels and watch out for our posts!
AGSD-UK YouTube channel
Our YouTube channel GSD Screen, has many videos dedicated to informing and providing support to those affected by GSD.
The channel features videos from our Winter Seasons 2021 and 2022 including presentations from medical professionals and patients’ stories. The channel also has videos on GSDs, courses, meetings and conferences, and covering some of our fundraising events. Several of the GSDs have their own playlists. We also link to other channels which we think will be of interest.
GSD Social Media
Glycogen Storage Disease in the UK and Ireland
The aim of this Facebook group is to share information, experiences and generally learn from one and other about how to deal with GSD’s on a daily basis.
Glycogen Storage Disease
This group is for all those that are affected, or have family that are affected by Glycogen Storage Disease.
These general facebook groups are not linked to or run by AGSD-UK
Remember, these groups are not run by medical professionals, but it can be very helpful in swapping experiences with other people affected by GSD. However, take care not to treat someone’s opinion as scientific fact.
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.
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.