International GSD conference 2022.
The International GSD Conference (IGSD2022) will be virtual this year.
NICE recommends Avalglucosidase alfa as a treatment option for Pompe.
24th August 2022 The National Institute for Health and Care Excellence today published its recommendation of Avalglucosidase alfa (AVAL) as an option for treating Pompe in babies, children, young people and adults, where AVAL is provided according to the commercial...
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.