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Keep up with the GSD news

Watch out for more GSD-related news.

Glisten magazine Spring 2024

Spring 2024 coming soon, in the meantime download previous editions.

Save the date! 9th/10th November

We are currently planning The Main Event 2024!

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?

Seminar for people affected by neuromuscular diseases.

Seminar for people affected by neuromuscular diseases.

Seminar Thursday 18th May - 5PM UK The research team at Newcastle University's John Walton centre are keen for people affected by neuromuscular conditions to join a seminar on 18th May: ‘We are glad to announce that we will be delivering a seminar on the 18 May at...

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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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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.