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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.

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.

Events for 2022

When? What? Where? Who for?
Jan Our Winter Season
Talks, presentations and events
Online Everyone
30 Jan AGSD-UK AGM Online AGSD-UK Members
28 Feb Rare Disease Day Worldwide Everyone
15 Apr International Pompe Day Worldwide Everyone
12 Jun Hepatic Social
0945 Coffee & Chat
1030 GSD3 Trial Presentation


email for zoom details



9th Jul

Pompe Social
0900 New treatments presentation followed by social

Online Pompe
30th Jul Pompe get together Birmingham Pompe