The Main Event 2023.
Register your interest now for The Main Event 2023.
Liberating Research GSD1a Study.
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 /...
LSD Collaborative Community Survey 2022.
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...
Wales Rare Diseases Action Plan.
Action Plan The Welsh Government have now published their Rare Diseases Action Plan in support of the 2021 UK Rare Disease Framework. The Wales Rare Diseases Action Plan 2022-2026 is available at the following links: English version Welsh version ...
New and Improved CureGSD1b Website.
The updated CureGSD1b website is now live.
GSD & ME website is updated.
The updated GSD & Me website is now live.