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Have you read the latest news?
Survey of muscle GSDs and COVID-19 issues.
IamGSD has launched a survey of people affected by muscle GSDs and how they are being affected by the COVID-19 pandemic.
Mendelian – reducing diagnostic delay in GSDs.
Mendelian, working to reduce diagnostic delay, and thus improve quality of life, in rare diseases including glycogen storage disease.
AGSD-UK new registrations up by 26% in 2019.
During 2019 the rate of new registrations with AGSD-UK increased by 26% over the previous year. We consider the reasons why.
IamGSD offers McArdle “Second Wind” T-shirts.
IamGSD has a limited-time opportunity to order McArdle’s “Second Wind” T-shirts, sweatshirts and hoodies. Order by 23 March.
Rare Disease Day – and happy 20th Lauren.
Rare Disease Day, 29th February, we celebrate everyone with rare conditions. Today Lauren is special as it’s also her 20th birthday.
Countdown to Rare Disease Day 2020: 1
Countdown to Rare Disease Day 2020 on 29th February. We can support you to give a talk to raise awareness of GSD.
It’s out… Glisten Spring 2020 is here!
The latest edition of our magazine is out. Glisten Spring 2020 is here, packed with news, reports, announcements and information.
GSD3 get-together – 14 March.
Coming up on Saturday 14 March is another get-together for those with GSD3. Bring children, family and friends.
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.