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Have you read the latest news?
Bladder control survey for GSD2 and GSD5
Manchester Metropolitan University is investigating how bladder problems affect quality of life in neuromuscular conditions, including Pompe and McArdle’s.
Insight to variability of onset in Pompe
”Pompe Disease News“ reports on a new genetic variant which may help explain the variability of symptom onset in Pompe disease.
Neuromuscular Centre Open Day on 20 June
The Neuromuscular Centre at Winsford, Cheshire, is holding an Open Day on Thursday 20 June. Of special interest for muscle GSDs.
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.
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.
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.
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.
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.
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.