Tuesday, 15th August 2023 | News, Pompe disease, Research
The National Institute for Health and Care Excellence has today published final guidance recommending cipaglucosidase alfa (CIPA) plus miglustat, within its marketing authorisation, as an option for treating late-onset Pompe disease in adults.
Wednesday, 17th May 2023 | News, Pompe disease, Support
Seminar Thursday 18th May – 5PM UK The research team at Newcastle University’s John Walton centre are keen for people affected by neuromuscular conditions to join a seminar on 18th May: ‘We are glad to announce that we will be delivering a seminar on...
Monday, 17th April 2023 | Fundraising, News, Pompe disease
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”.
Wednesday, 24th August 2022 | News, Pompe disease, Research
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...
Saturday, 11th June 2022 | News, Pompe disease, Research
An update on the appraisal of treatments for Pompe by NICE.
Thursday, 7th April 2022 | News, Pompe disease
International Pompe Day – 15th April 2022
