What do you need from AGSD-UK?
I am newly diagnosed and need information.
What are the sources of help and support?
In what ways can I support AGSD-UK?
What are the sources of medical guidance?
How do I access policies, finance and reports?
Have you read the latest news?
Do you have a GSD news story? Just message us, or see the relevant section of Notes for contributors.
In case you missed these web site developments.
We have introduced a number of new features on the web site this year. Here is the low down.
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Amy’s school Fun Run for her brother Eric.
Twin boys born with GSD1a and 8 year old big sister Amy organised a school Fun Run to help fund research.
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Big leap forward in genetic diagnosis of rare diseases.
Under a plan by the NHS Genomic Medicine Service, genome sequencing is set to revolutionise the diagnosis of rare childhood conditions.
read more
Invitation to young people with a rare condition
The Royal College of Paediatrics and Child Health invites young people to network with each other, support groups, medical professionals and policy makers.
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More personal stories wanted
AGSD-UK is appealing for more personal stories from all the GSDs. There is great value in the the stories for those who are newly diagnosed.
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Camps available: Children’s Liver Disease Foundation
Dates for 2019 – families with children affected by hepatic GSDs can access children’s camps through the Children’s Liver Disease Foundation.
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Gene therapy updates due at our 2019 conference
Dr Guiseppe Ronzitti, a group leader at Généthon, confirmed to speak on gene therapy developments for GSDs at our 2019 conference.
read more
Save the date – IGSD2019 conference, Brazil
The 5th International GSD Conference will be held in Porto Alegre, Brazil, over 14 to 16 November 2019. Registrations now open!
read moreUse the scroll links to move back and fore through our news stories.
Read some personal stories
Do you have an interesting personal story to tell? Just message us or visit the Notes for contributors.
Walker twins
GSD9a
Sue Davey
Pompe
GSD2
GSD2
Ciara Harkins
Von Gierke
GSD1a
GSD1a
Caroline Holdstock
Hers disease
GSD6
GSD6
Trushal Pindolia
Von Gierke
GSD1a
GSD1a
Jae Machin
GSD9
Marilyn Silver
Tarui disease
GSD7
GSD7
Mylo Moore
Cori disease
GSD3a
GSD3a
Andrea Duckworth
Pompe disease
GSD2
GSD2
John Davey
McArdle disease
GSD5
GSD5
Michael Taylor
Tarui disease
GSD7
GSD7
Melissa Hipkiss
McArdle disease
GSD5
GSD5
Jeanne Graham
McArdle disease
GSD5
GSD5
Jennifer Howells
McArdle disease
GSD5
GSD5
Anosha Kahn
Cori disease
GSD3
GSD3
Sam Murduck
Pompe Disease
GSD2
GSD2
Vicky Clarke
Pompe disease
GSD2
GSD2
Andy Williams
McArdle disease
GSD5
GSD5
Nikki Christie
Cori disease
GSD3
GSD3
Mike Nicholls
Pompe disease
GSD2
GSD2
David Thompson
McArdle disease
GSD5
GSD5
Tony Mitchell
Pompe disease
GSD2
GSD2
Margaret Carter
McArdle disease
GSD5
GSD5
Your ways to donate
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 goups.
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.