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Von Gierke Disease (GSD1)

Information & Support

A booklet for children with GSD1a, a map of affected people in the UK and some links of interest to those learning about GSD1.

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

GSD Type 1a Social Media

Glycogen Storage Disease information, sharing, and support more specifically for type 1a. This is a closed group in an effort to maintain a safe, private space for discussion.

Visit the page

GSD Type 1b Social Media

A group for people and caregivers with Glycogen storage disease type 1b

Visit the page

These general and GSD1a & b 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.