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.
All our routine meetings are cancelled or moved online.
We plan to run our conference online through the Autumn and Winter. More information to follow about how to sign up.
We hope to organise regional face-to-face meetings in early 2021.
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 |
| Sept | New Born Screening month | Nationwide | Everyone |
| Oct | Muscular Dystrophy UK ‘Muscles Matter’ series of presentations | Online | Muscle GSDs |
| 8-9 Oct |
National Organisation for Rare Disorders (North America) ‘Entering a New Era’ summit |
Online | Everyone |
| 11 Oct | Metabolic Support UK Future plans for IMD services by speakers from BIMDG | Online | Everyone |
| 17 Oct | Gemma’s AGSD-UK Quiz for fun (11am) | Online | 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 |
| 28 Nov | RAREfest20 | Online | Everyone |