Tuesday, 28th February 2023 | News, Support
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...
Tuesday, 7th February 2023 | News, Support
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...
Wednesday, 21st December 2022 | News, Support
Date change for The Main Event 2023
Thursday, 10th November 2022 | News, Support
Register your interest now for The Main Event 2023.
Tuesday, 1st November 2022 | News, Research, Support, Von Gierke disease
GSD1a Patient Research Please find below a link to an invitation for UK families affected by GSD1a to take part research by Liberating Research to improve understanding of the impact of the condition. Who can participate?People living with GSD1a and their partners /...
Tuesday, 6th September 2022 | News, Research, Support
Clinical and Social Care Services Please take the chance to respond to an important survey to improve understanding about the quality of care you experience from your specialist hospital clinic, homecare, and other social care services. The survey is designed by the...