Calendar of events

2021 events are still disrupted by the COVID-19 pandemic. If you plan to attend any of these events, please check arrangements with us or other organisers in advance.

All our routine meetings are cancelled or moved online.

In place of our annual conference we have a Winter Season of talks, presentations and events from December 2020 to February 2021. 

We hope to organise regional face-to-face meetings later in 2021.

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.