Support is available through our GSD0 coordinator and our social media. Also, we have a some links to further information.
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 Facebook groups
These general Facebook groups are not linked to or run by AGSD-UK. These groups include people affected by many different GSDs, so information may not be applicable to your GSD unless it clearly states that it is.
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.
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 GSDs 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.