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Have you read the latest news?
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 extended to 10 May.
World Record at Evelina GSD Family Day?
Maybe a World Record, new friendships, knowledge and reassurance for those affected by GSD at the Evelina Hospital’s GSD Family Day.
FDA grants Breakthrough Therapy Designation to Amicus
The U.S. FDA has granted Breakthrough Therapy Designation to Amicus’ AT-GAA in Late Onset Pompe Disease.
Cori the Supercat rides again!
Cori is a cat, with lots of kitten friends. He is on a mission to support children with GSD3.
Pilot of new website reaches over 2,000 people
Following great feedback, we are now going public – announcing the new website to professionals, industry, funders, etc.
AGSD-UK member Charlie Power is now famous!
Charlie appeared in the newspaper of the Queen Elizabeth Hospital Birmingham. Here is his story, reprinted from news@uhb.
McArdle’s service seeks a Clinical Fellow
The McArdle disease and related disorders service, National Hospital for Neurology and Neurosurgery in London, is recruiting a Clinical Fellow.
Amici! 101 Tips for Pompe now in Italian
Congratulations to Martina on her degree in translation. Her final project was translating 101 Tips for Pompe into Italian.
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.