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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 find policies, finance, reports?
Have you read the latest news?
Patient-identified phenomenon confirmed in GSD5.
A phenomenon identified on AGSD-UK’s walking courses has been presented in a poster at the World Muscle Society Congress.
The AGSD-UK office has moved!
The AGSD-UK office has now moved from Droxford, near Southampton, to Chester le Street, near Durham. The phone number stays the same.
Report of gene therapy in animal model of GSD5.
A new paper reports on the amelioration of disease through delivery of gene therapy in the mouse model of McArdle disease.
Recent papers on CK, GSD5 and gene therapy.
Recent papers: one on genetic testing for high CK, a GeneReviews update on McArdle’s and a review of gene therapy in GSDs.
Conference late bookings still open.
Routine bookings for the AGSD-UK Annual Conference, 5/6 October, are now closed. But we can still easily accommodate day delegates and possibly a few residential packages.
AGSD-UK initiative spreads across the world.
In 2011 AGSD-UK ran a week-long walking course for people with McArdle disease. It has spread to four countries so far.
AGSD-UK says farewell to Allan Muir.
As Allan Muir leaves AGSD-UK, we try to capture in words what he has achieved for the UK and international GSD community over his 28 years of involvement.
Could you manage our website and social media?
AGSD-UK is seeking someone to fill the role of Communications Manager with responsibility for our website and social media.
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
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.