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Calendar of events

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 below gives dates and venues of all types of event, often with a link to further details.

Go to the description of our types of event.

Events for 2020

Date/s Event Who for
29 Feb Rare Disease Day Everyone
15 Apr International Pompe Day, UK regional meetings Pompe
15-16 May European Conference on Rare Diseases & Orphan Products, Stockholm, Sweden Specialist conference
18-24 May IamGSD Annual Walking Week McArdle’s
19 May Hepatic Guidelines drafting meeeting, Birmingham Childrens Hospital  Hepatic professionals
6-13 Aug Walking with McArdle’s course, Snowdonia McArdle’s and related muscle GSDs
13-17 Aug Children & Parents event, Snowdonia McArdle’s
Any day 16-20 Sept Jeans for Genes Day, fundraiser Everyone
1st or 2nd w/e of Oct, TBD AGSD-UK Annual Conference and AGM Everyone
18-24 Oct Invisible Disabilities Week Everyone

We offer many types of event from family days to kids camps, courses, workshops and conferences. More details here.