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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?

Rare Disease Day 2024.

Rare Disease Day 2024.

Today is Rare Disease Day! This rarest of days, 29th February is a great opportunity to raise awareness about rare conditions. Visit to find out more about how to get involved in this international campaign. Thanks go to all our...

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Virtual Festive Event.

Virtual Festive Event.

AGSD-UK is holding a Virtual Festive Event on the 9th of December at 1.00pm. Come along and make sure you wear a Festive hat, as there will be a prize for the best headgear. We will have a Quiz and time for everyone to catch up. For more information, please contact...

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Newborn Genomes Programme.

Newborn Genomes Programme.

GSDs on list of conditions for inclusion in Newborn Genomes Programme research study. Genomics England has published an initial list of conditions that will be screened for as part of their forthcoming Generation Study, which includes some GSDs. The study will...

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NICE recommends cipaglucosidase alfa plus miglustat.

NICE recommends cipaglucosidase alfa plus miglustat.

The National Institute for Health and Care Excellence has today published final guidance recommending cipaglucosidase alfa (CIPA) plus miglustat, within its marketing authorisation, as an option for treating late-onset Pompe disease in adults.

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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.