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.
Events for 2020
|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|