Select Page

A hugely important part of our work is the holding of events where people affected by these ultra-rare conditions can meet, share experiences and learn about their condition.

Our calendar gives dates and venues of all types of event, often with a link to further details.

We offer many types of event from family days to kids camps, courses, workshops and conferences. More details here.

Events for 2024

When? What? Where? Who for?
14 Jan



Online AGSD-UK members
25 Jan Living Well Social Online Everyone
29 Feb Rare Disease Day Worldwide Everyone
14 Mar Parents’ Group Online Everyone
13 Apr

Pompe social


Fox and Grapes

Leeds LS15 4NJ

29 Jun Pompe social Newcastle Pompe
29 Jul – 5 Aug Under 21s Walking Course Brecon Beacons McArdle’s
5 Aug – 9 Aug Main walking course Brecon Beacons McArdle’s
7 Sep Hepatic social Reading Hepatic