International Pompe Day 15 April 2023.
The IPA focused this year’s International Pompe Day on the importance of movement, sharing stories from the community under the slogan “Every Move Counts”.
London Marathon 2023.
London Marathon 2023 AGSD-UK has 4 brilliant and brave supporters running the London Marathon on 23rd April. To read their motivation for running please have a look at the individual stories on their fundraising pages. Any donations would be very much appreciated....
Rare Disease Day 2023.
Rare Disease Day is taking place on 28th February 2023 This Rare Disease Day is an opportunity to highlight the importance of effective, coordinated care for people living with rare conditions. Visit the Rare Disease Day 2023 website to find out more! Rare...
Help Us Raise Awareness.
Help us raise awareness and share experiences With rare disease day approaching at the end of February can you help us raise awareness of GSD and what it’s like to live with the condition? Just send a short video clip of the way your condition affects a...
Newsflash – The Main Event 2023 date change!
Date change for The Main Event 2023
The Main Event 2023.
Register your interest now for The Main Event 2023.