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Have you read the latest news?
Lived experience advisory panel.
Could you represent the rare experience on this new venture from The Patient Association?
Whole Genome Sequencing for newborn screening.
Genomics England have released findings that show the public are generally supportive of using whole genome sequencing for newborn screening.
Step-Free Access in London – BBC Politics Show
Jeff Harvey demonstrates the difficulties caused by the lack of step-free access on public transport in London.
We are recruiting a CEO
AGSD-UK is seeking to recruit a Chief Executive Officer, a senior manager looking for a rewarding move within the charity sector. Closing date is 02 August 2021.
3 Peak Challenge successfully completed!
Florence Osborne and a team of friends have successfully completed the gruelling 3 Peaks Challenge.
AGSD-UK’s Andrew Wakelin featured in National Trust magazine.
Andrew Wakelin has an article about his McArdle’s walking courses in the latest National Trust magazine
Rare disease and the lessons learned from the COVID-19 pandemic.
Making the Unseen Seen: Rare disease and the lessons learned from the COVID-19 pandemic.
Liver Glycogen Storage Disease Top 11 Questions.
The top eleven questions that patients, families and healthcare professionals want to be addressed in liver storage disease by researchers.
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.