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Information & Support

Meet our GSD9 coordinator, plus details of social media and we have some links for you 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.

Visit our AGSD-UK Facebook page

Visit our AGSD-UK Twitter account page

Visit our AGSD-UK Instagram page

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.

Visit the GSD Screen YouTube channel.

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.

Visit the page

Glycogen Storage Disease

This group is for all those that are affected, or have family that are affected by Glycogen Storage Disease.

Visit the page

GSD9 Social Media

Glycogen Storage Disease type 9

This private facebook page is for all affected by GSD9

Visit the page

Glycogen Storage Disease 9d – IamGSD

Have you, a family member, or a friend been diagnosed with GSD9d – known as the muscle-specific subtype of GSD9? This group offers individuals with GSD9d (both diagnosed and those seeking a diagnosis) and family/friends an online community to ask questions, share experiences and build relationships world-wide.
In addition, the Admins post evidence-based information and updates about the condition, how to manage day-to-day, current research, and international events.
PLEASE NOTE: we do not cover the other subtypes of GSD9, primarily involving the liver, for which there are other more relevant Facebook groups.

Visit the page

These general and GSD9 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.