All our routine meetings are cancelled or moved online.

For winter 2021/22 we will again have a Winter Season of talks, presentations and events in place of our annual conference. Details of this January event will be coming soon. 

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.