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Have you read the latest news?
Update on Pompe Disease Treatment.
Avalglucosidase-alfa was awarded EAMS (Early Access to Medicines Status) in February 2021.
RCPCH &Us Rare Disease Survey.
RCPCH &Us have a survey for children & young people aged 13-25, who have a rare disease & live in the UK.
Aldwyn Cooper 1949 – 2021.
We are sad to report that AGSD-UK member Aldwyn Cooper has passed away.
Trial: Seroprevalence study in Pompe disease.
The John Walton Muscular Dystrophy Research Centre in Newcastle is running a new study in Pompe disease.
Rare Disease Day 2021
2 days to go until Rare Disease Day 2021.
Eurordis H-Care Survey of rare diseases results.
Eurordis key findings from a survey on patients’ and carers’
experience of medical care for their rare diseases.
Winner announced of the PST Avatar Competition.
The Pompe Support Team wanted to create a fun opportunity for children, as a show of support during lockdown.
Spark Therapeutics doses the first participant in Gene Therapy trial.
Spark Therapeutics Announces First Participant Dosed in Phase 1/2 Study of Investigational Gene Therapy for Late-Onset Pompe Disease
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.
Maryam Ahmed
GSD1a
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.