2020 events are massively 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.
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 POSTPONED UNTIL LATER IN YEAR |
Evelina Hospital, London | Hepatic GSDs |
| 14 Mar | GSD3 get-together with CATS POSTPONED UNTIL LATER IN YEAR |
Cudworth Village Hall, near M42/ M6 junction | GSD3 |
| 4 Apr | Pompe Social Meeting CANCELLED |
Premier Inn, Stoke on Trent | Pompe – everyone welcome |
| 15 Apr | International Pompe Day |
Meetings in Swansea and Southampton CANCELLED |
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 Children’s 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 WATCH OUT FOR ANNOUNCEMENTS |
Wyboston Lakes, Bedfordshire | Everyone |
| 18-24 Oct | Invisible Disabilities Week | Worldwide | Everyone |