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Have you read the latest news?
International GSD conference in Brazil next month.
The 5th International GSD Conference (IGSD2019) takes place in Porto Alegre, Brazil, from 14 to 16 November 2019.
AGSD-UK welcomes national conversation on rare diseases.
Minister at Dept. of Health and Social Care announces a national conversation to understand how to improve care for rare diseases.
Scheme helps rail passengers with hidden disabilities.
Southeastern Trains are planning to trial a scheme next year to help passengers with hidden disabilities, which could include GSD.
AGSD-UK board of trustees seeks new members.
Three trustees retired at the AGM, so the board is now down to four members and it is actively seeking new trustees. Can you help?
Patient-identified phenomenon confirmed in GSD5.
A phenomenon identified on AGSD-UK’s walking courses has been presented in a poster at the World Muscle Society Congress.
Recent papers on CK, GSD5 and gene therapy.
Recent papers: one on genetic testing for high CK, a GeneReviews update on McArdle’s and a review of gene therapy in GSDs.
AGSD-UK says farewell to Allan Muir.
As Allan Muir leaves AGSD-UK, we try to capture in words what he has achieved for the UK and international GSD community over his 28 years of involvement.
The AGSD-UK office has moved!
The AGSD-UK office has now moved from Droxford, near Southampton, to Chester le Street, near Durham. The phone number stays the same.
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.
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.