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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 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

When? What? Where? Who for?
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

When? What? Where? Who for?