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Keep up with the GSD news

Watch out for more GSD-related news.

Glisten magazine Autumn 2023

The Autumn 2023 edition of Glisten is now available to download.

The Main Event 2023

20th-21st May 2023 – Burleigh Court, Loughborough

Latest news


How we did



In touch

What do you need from AGSD-UK?

I am newly diagnosed and need information.

What are the sources of help and support?

In what ways can I support AGSD-UK?

What are the sources of medical guidance?

How do I find policies, finance, reports?

Have you read the latest news?

London Marathon 2023.

London Marathon 2023.

London Marathon 2023 AGSD-UK has 4 brilliant and brave supporters running the London Marathon on 23rd April. To read their motivation for running please have a look at the individual stories on their fundraising pages. Any donations would be very much appreciated....

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Rare Disease Day 2023.

Rare Disease Day 2023.

Rare Disease Day is taking place on 28th February 2023   This Rare Disease Day is an opportunity to highlight the importance of effective, coordinated care for people living with rare conditions. Visit the Rare Disease Day 2023 website to find out more! Rare...

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Help Us Raise Awareness.

Help Us Raise Awareness.

Help us raise awareness and share experiences   With rare disease day approaching at the end of February can you help us raise awareness of GSD and what it's like to live with the condition? Just send a short video clip of the way your condition affects a typical...

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Liberating Research GSD1a Study.

Liberating Research GSD1a Study.

GSD1a Patient Research Please find below a link to an invitation for UK families affected by GSD1a to take part research by Liberating Research to improve understanding of the impact of the condition. Who can participate?People living with GSD1a and their partners /...

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Use the scroll links to move back and fore through our news stories.
If you have a GSD news story message us or see Notes for contributors.

Read some personal stories

Do you have an interesting personal story to tell? Just message us or visit the Notes for contributors.

For personal stories on an individual GSD, visit the page for that GSD.

What and who we are

  • National support group for those affected by Glycogen Storage Disease (GSD) and their families.
  • Membership based with an elected board of trustees.
  • A company limited by guarantee and a registered charity.
  • Collaborators with UK rare disease and international GSD groups.

Keep in touch

Register FREE with AGSD-UK to keep in touch with the latest developments and future conferences, workshops, courses and fundraising events. It helps you keep in touch with other patients and families. You will receive our magazine, Glisten, by email.