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 access policies, finance and reports?
Keep up with the latest news
Do you have a GSD news story? We’d like to know. See the relevant section of Notes for Contributors.
AGSD-UK hosts workshop to develop hepatic guidelines
In May AGSD-UK facilitated a meeting of UK metabolic specialists to discuss guidelines for management of hepatic GSDs.
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Debut performance of new harp by GSD5 patient
Sioned Williams to give debut performance of new instrument, the Soveida Harp, which articulates its sound in eerie stereo.
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IamGSD’s Global Walking Week starts 20 May
Every year people with muscle GSDs, particularly McArdle’s for which the most effective treatment is physical activity, participate in this walking week.
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Are statistics your thing?
We‘ve been improving our database and ensuring GDPR compliance. We are now starting to have fascinating insights into our statistics.
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Get-togethers on International Pompe Day
Thanks to the Pompe Support Team and other hosts, successful get-togethers were held around the UK to celebrate International Pompe Day.
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Glisten Spring 2019, out now!
The Spring 2019 edition of our magazine Glisten is out now, 60 pages packed with news and information.
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Do you feel no-one has heard of GSD?
That is what member Niamh, who has GSD3, thought until she got a shock as she completed her GCSE Biology exam.
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New infographic helps celebrate International Pompe Day
For International Pompe Day on Monday 15 April, Amicus Therapeutics UK have released a new infographic leaflet/poster.
read morePersonal stories
Do you have an interesting personal story to tell? See the relevant section of Notes for Contributors.
Walker twins
GSD9a
Sue Davey
Pompe
GSD2
GSD2
Ciara Harkins
Von Gierke
GSD1a
GSD1a
Caroline Holdstock
Hers disease
GSD6
GSD6
Trushal Pindolia
Von Gierke
GSD1a
GSD1a
Jae Machin
GSD9
Marilyn Silver
Tarui disease
GSD7
GSD7
Mylo Moore
Cori disease
GSD3a
GSD3a
Andrea Duckworth
Pompe disease
GSD2
GSD2
John Davey
McArdle disease
GSD5
GSD5
Michael Taylor
Tarui disease
GSD7
GSD7
Melissa Hipkiss
McArdle disease
GSD5
GSD5
Jeanne Graham
McArdle disease
GSD5
GSD5
Jennifer Howells
McArdle disease
GSD5
GSD5
Anosha Kahn
Cori disease
GSD3
GSD3
Sam Murduck
Pompe Disease
GSD2
GSD2
Vicky Clarke
Pompe disease
GSD2
GSD2
Andy Williams
McArdle disease
GSD5
GSD5
Nikki Christie
Cori disease
GSD3
GSD3
Mike Nicholls
Pompe disease
GSD2
GSD2
David Thompson
McArdle disease
GSD5
GSD5
Tony Mitchell
Pompe disease
GSD2
GSD2
Margaret Carter
McArdle disease
GSD5
GSD5
Your ways to donate
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 goups.
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.