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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 2023

When? What? Where? Who for?
15 Jan



Online AGSD-UK members
28 Feb Rare Disease Day Worldwide Everyone
15 Apr International Pompe Day Worldwide Everyone
20-21 May The Main Event 2023 Loughborough Everyone
21-28 Jul Future Leaders course Eryri /  Snowdonia McArdle’s
28 Jul – 1 Aug Children & Parents event Eryri /  Snowdonia McArdle’s
28 Jul – 4 Aug Main walking course Eryri /  Snowdonia McArdle’s
30 Nov Living Well Social Online Everyone
09 Dec Festive Event Online Everyone