Glisten August 2020 is out!
The latest edition of our magazine Glisten is here, dated August 2020. Packed with news, reports, research and fundraising ideas.
COVID-19 impact survey for families.
A survey looking at the Covid-19 impact on wellbeing in families of children with rare neurodevelopmental and genetic disorders study
Pompe Support Team’s leaflet used in Australia!
Pompe Support Team’s Medical Overview leaflet is now being used in Australia.
Audentes Pompe Gene Therapy Trial News.
Audentes is now enrolling patients with late-onset Pompe disease in the Phase 1/2 clinical trial.
Free Online Mindfulness Course.
AGSD-UK are offering a free online mindfulness course to those working with or affected by GSD.
Open Health Webinar – Educating Physicians.
This webinar will explore educating physicians in rare diseases. It is open to all.