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
|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|