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Calendar of events

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
Evelina Hospital, London Hepatic GSDs
14 Mar GSD3 get-together with CATS
Cudworth Village Hall, near M42/ M6 junction GSD3
4 Apr Pompe Social Meeting
Premier Inn, Stoke on Trent Pompe – everyone welcome
15 Apr International Pompe Day
Meetings in Swansea and Southampton
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
Wyboston Lakes, Bedfordshire Everyone
18-24 Oct Invisible Disabilities Week Worldwide Everyone
28 Nov RAREfest20 Online Everyone