Select Page

Latest news

Stories

How we did

Donate

Calendar

In touch

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?

Virtual Festive Event.

Virtual Festive Event.

AGSD-UK is holding a Virtual Festive Event on the 9th of December at 1.00pm. Come along and make sure you wear a Festive hat, as there will be a prize for the best headgear. We will have a Quiz and time for everyone to catch up. For more information, please contact...

read more
Newborn Genomes Programme.

Newborn Genomes Programme.

GSDs on list of conditions for inclusion in Newborn Genomes Programme research study. Genomics England has published an initial list of conditions that will be screened for as part of their forthcoming Generation Study, which includes some GSDs. The study will...

read more
NICE recommends cipaglucosidase alfa plus miglustat.

NICE recommends cipaglucosidase alfa plus miglustat.

The National Institute for Health and Care Excellence has today published final guidance recommending cipaglucosidase alfa (CIPA) plus miglustat, within its marketing authorisation, as an option for treating late-onset Pompe disease in adults.

read more
Seminar for people affected by neuromuscular diseases.

Seminar for people affected by neuromuscular diseases.

Seminar Thursday 18th May - 5PM UK The research team at Newcastle University's John Walton centre are keen for people affected by neuromuscular conditions to join a seminar on 18th May: ‘We are glad to announce that we will be delivering a seminar on the 18 May at...

read more

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.

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.