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What do you need from AGSD-UK?
I am newly diagnosed and need information.
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What are the sources of medical guidance?
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Have you read the latest news?
Our new CEO introduces himself.
Neil Bradbury, our newly appointed Chief Executive Officer, introduces himself to our membership, and gives an insight into his plans.
Trial of Whole Genome Sequencing for newborns.
Development of services from Genomcs England continues apace, with the launch of a trial of whole genome sequencing for newborn babies.
Did you know we have an interactive glossary?
Plenty of medical and technical words are used in our website, but help is at hand with our on-line interactive glossary.
AGSD-UK helps fulfil football dreams for Ismail.
Ismail lives with Infantile Onset Pompe Disease. Aged 19, his abiding passion is football. He plays using an adapted wheelchair.
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?
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.