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.
Calendar of events
|IamGSD Global Walking Week||People with McArdle’s and related muscle GSDs.|
|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.|
|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|
|6 Oct||Annual General Meeting – elect trustees, vote on business topics, Cheshire||Members and visitors|
|29 Feb||Rare Disease Day||Everyone|
|15 Apr||International Pompe Day, UK regional meetings||Pompe|
Watch out for details of more upcoming events.
Having fun at one of our GSD Kids Camps
GSD children can have a great time joining Kids Camps for children diagnosed with a range of genetic conditions.
GSD5 group summits Hay Bluff on a walking course
Although called “Walking with McArdle’s” this week-long residential course held every summer actually helps people learn the techniques for managing “activities of daily living”.
Riders on the Prudential Ride London sponsorship event.
Some great comraderie can be gained by joining an AGSD-UK team on a sponsorship event. For 2019 we have 22 places in the Prudential Ride London Surrey event.
Annual conference and workshops.
Our AGSD-UK Annual Conference is held each autumn at locations rotating around the country. There are also international conferences to attend.
A family day – young people, parents and medical staff.
Several Family Days are held in locations around the UK each year.
Making friends in a supportive environment.
Children & Parents events
A “Children & Parents event” for McArdle (GSD5) children is held each summer.