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 2020
|10-14 Feb||Feeding Tube Awareness Week||Worldwide||Mainly hepatic GSDs|
|26 Feb||Rare Disease Event, Pompe Support Team members joining||Salford Royal Hospital||Pompe|
|29 Feb||Rare Disease Day||Worldwide||Everyone|
|7 Mar||Evelina Family Day||Evelina Hospital, London||Hepatic GSDs|
|14 Mar||GSD3 get-together with CATS||Cudworth Village Hall, near M42/ M6 junction||GSD3|
|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||The annual IamGSD ‘Global Walking Week’||Worldwide||McArdle’s and other muscle GSDs|
|19 May||Hepatic Guidelines drafting meeting||Birmingham Childrens Hospital||Hepatic professionals|
|6-13 Aug||Walking with McArdle’s course||Snowdonia||McArdle’s|
|13-17 Aug||Children & Parents event||Snowdonia||McArdle’s|
|Any day 16-20 Sept||Jeans for Genes Day, fundraiser||Nationwide||Everyone|
|17-18 Oct||AGSD-UK Annual Conference and AGM||Wyboston Lakes, Bedfordshire||Everyone|
|18-24 Oct||Invisible Disabilities Week||Worldwide||Everyone|
Events for 2021