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Have you read the latest news?
Extension of Early Access to Medicines Scheme for trial Pompe drug.
An update on avalglucosidase alfa.
Success for our Benefits Advisor.
AGSD-UK’s Zainib Hussain has been providing much needed support.
GSD in the National News.
7 year old twins in Scotland have received their first Covid vaccinations.
CureGSD1b Research Ready Data Collection Plan.
The CureGSD1b Research Alliance is working extensively on a full understanding of the research landscape related to GSD1b at the moment.
Winter Season 2022
We again will be releasing videos on every Monday of January for our Winter Season.
Progress on NICE assessment of new treatments.
An update on the appraisal of treatments for Pompe by NICE.
Nigel Walker runs London Marathon to support AGSD-UK.
Well done to Nigel Walker who has completed the 2021 London Marathon.
Winter Season of GSD talks and events coming soon.
This year AGSD-UK will again be offering a series of talks and presentations
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.
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?
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.
Nina Contreras D’Agosto
GSD1b
Esme and Dexter
Andersen
GSD4
GSD4
Julia László
Andersen
GSD4
GSD4
John Foxwell
Pompe
GSD2
GSD2
Alphie Wretham
GSD9a
Chloe Donald
Von Gierke
GSD1a
GSD1a
Ruben Briggs
GSD9a
Amanda Porter
Pompe
GSD2
GSD2
Walker twins
GSD9a
Sue Davey
Pompe
GSD2
GSD2
Ciara Harkins
Von Gierke
GSD1a
GSD1a
Caroline Holdstock
Hers
GSD6
GSD6
Trushal Pindolia
Von Gierke
GSD1a
GSD1a
Jae Machin
GSD9
Marilyn Silver
Tarui
GSD7
GSD7
Mylo Moore
Cori
GSD3a
GSD3a
Andrea Duckworth
Pompe
GSD2
GSD2
John Davey
McArdle
GSD5
GSD5
Michael Taylor
Tarui
GSD7
GSD7
Jeanne Graham
McArdle
GSD5
GSD5
Jennifer Howells
McArdle
GSD5
GSD5
Anosha Kahn
Cori
GSD3
GSD3
Sam Murduck
Pompe
GSD2
GSD2
Vicky Clarke
Pompe
GSD2
GSD2
Andy Williams
McArdle
GSD5
GSD5
Nikki Christie
Cori
GSD3
GSD3
Mike Nicholls
Pompe
GSD2
GSD2
David Thompson
McArdle
GSD5
GSD5
Tony Mitchell
Pompe
GSD2
GSD2
Margaret Carter
McArdle
GSD5
GSD5
Melissa
McArdle
GSD5
GSD5
Personal stories
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.