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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 below gives dates and venues of all types of event, often with a link to further details.

Go to the description of our types of event.

We offer many types of event from family days to kids camps, courses, workshops and conferences. More details here.

Events for 2019

Date/s Event Who for
Sat 9 Nov Family Day at Great Ormond Street Hospital GSD children and their parents
14-16 Nov IGSD2019, 5th International GSD Conference, Brazil



Past events in 2019

Date/s Event Who for
20-26 May IamGSD Global Walking Week People with McArdle’s and related muscle GSDs.
19 Jun Presentation “Gene Therapy approaches for LSD” at conference of British Society for Gene and Cell Therapy Those interested in Pompe (GSD2), but it is just one session in the conference.
20 Jun Neuromuscular Centre Open Day, Winsford, Cheshire. More details here. All muscle GSDs
19-26 Jul Walking course, Pembrokeshire McArdle’s (GDSD5) and other muscle GSDs
24-28 Jul Children & Parents event, Pembrokeshire Children with McArdle’s (GSD5) and a parent/s
4 Aug Prudential RideLondon-Surrey, sponsorship cycling event Everyone – we have 20 places available

5-6 Oct 

Annual conference and workshops, Cheshire Everyone

Sun 6 Oct 

Annual General Meeting – elect trustees, vote on business topics, Cheshire Members and visitors

Sat 19 Oct

Family Day at Birmingham Children’s Hospital GSD children and their parents

25-27 Oct

AMDA/IPA International Pompe Patient and Scientific Conference, San Antonio, Texas Pompe

Events for 2020

Date/s Event Who for
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
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

Watch out for details of more upcoming events.