We offer a range of events on which you can meet other people affected by your GSD, and others.
Read here about the different types of event, then go to our calendar of events.
Read about our types of event
Having fun at one of our GSD Kids Camps
Kids Camps
GSD children can have a great time joining Kids Camps for children diagnosed with a range of genetic conditions. Read a news story about these camps.
For children with hepatic GSDs, camps offered by the Children’s Liver Disease Foundation include events such as:
- Wales Family Weekend
- Wild Camp
- Weekender (ages 16 – 24)
- Family Day
These may be held at locations around the UK. For more information read our News item from June 2019.
GSD5 group summits Hay Bluff on a walking course
Walking Courses
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”.
People affected by GSD7 (Tarui diease) have also attended, and anyone with a muscle GSD is welcome to enquire of the GSD5 Coordinator.
Annual conference and workshops.
Conferences
Our AGSD-UK conferences provide an extensive programme of speakers, interactive workshops and activities across all GSDs.
We also signpost people to relevant international conferences.
A family day – young people, parents and medical staff.
Family Days
Several Family Days are held by AGSD-UK in locations around the UK each year. These enable affected children and young people, their parents and medical professionals to meet in an informal atmosphere.
See the news stories and photos of Family Days at:
Great Ormond Street Hospital, London, and
Newcastle Royal Infirmary.
Making friends in a supportive environment.
Children & Parents events
A “Children & Parents event” for McArdle (GSD5) children is held each summer. (It is potenially open also to children affected by other muscle GSDs – please contact the GSD5 Coordinator.)
This is held over a long weekend, and is a residential get together. In addition to learning about their condition, children can make friends and parents can network.
Riders on the Prudential Ride London sponsorship event.
Sponsorship events
Some great comraderie can be gained by joining an AGSD-UK team on a sponsorship event.
We welcome people bidding for a place in the London Marathon and nominating us as their chosen charity. We also hold a Silver Award entitling us to a place in the London Marthon every five years. We have had 20 places in the Prudential Ride London Surrey event, and hope to have the same again.
Celebrating International Pompe Day.
External events we support
Apart from international conferences (see above), there are many other events held by other organisations, which we are invited to engage with.
Some examples are: International Pompe Day, Rare Disease Day, the IamGSD’s Global Walking Week, Hidden Disabilities Week, and the Neuromuscular Center Open Day.
For details as they arise, keep an eye on our News stories on the home page and on our Calendar of Events.