Monday, 15th April 2024 | News, Pompe disease
Find out about new Pompe information resources
Thursday, 4th April 2024 | News, Support
Main Event 2024
Thursday, 29th February 2024 | News, Support
Today is Rare Disease Day! This rarest of days, 29th February is a great opportunity to raise awareness about rare conditions. Visit https://www.rarediseaseday.org/ to find out more about how to get involved in this international campaign. Thanks...
Tuesday, 12th December 2023 | News, Pompe disease, Research
Cipaglucosidase alfa (Pombiliti®) is accepted for use within NHS Scotland The Scottish Medicines Consortium has completed its assessment of cipaglucosidase alfa and has advised that this offers an additional treatment choice as a long-term enzyme replacement...
Wednesday, 29th November 2023 | GSD families, News, Support
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...
Thursday, 16th November 2023 | News, Research, Von Gierke disease
Ultragenyx have provided the following community update on the development of DTX401, their investigational gene therapy for the potential treatment of GSDIa. GSDIa Community...