Booking now open for our Main Event 4th-5th July Loughborough.
Don’t miss the chance to share support, find out about latest developments and try new activities -you’ll get a warm welcome in a great venue and crèche places are available.
April 15th is International Pompe Day.
To help raise awareness Emmie has been talking about daughter Arla and the family’s experience on infant onset Pompe. You can find out more here.
15th April is International Pompe Day.
Find out more about what a typical day might look like for community members affected by Pompe and what they find most helpful.
McArdle walking courses open
Full details of the 2025 McArdle walking courses are now available, and we are open for bookings.
Rare Disease Day 2025
Today is Rare Disease Day!
Research opportunities for people affected by hepatic GSDs.
Find out about how to get involved in current hepatic GSD research studies.