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Our events for patients and families

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.

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.

Contact the Specialist Care Adviser.

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.

Go to our walking course information.

Annual conference and workshops.

Conferences

Our AGSD-UK Annual Conference is held each autumn at locations rotating around the country. In addition to the plenary sessions, there is an extensive programme of workshops on the different GSDs.

There are also international conferences to attend.

Go to our Conferences information.

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. 

Contact the Specialist Care Adviser.

 

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.

Go to the Children & Parents event page.

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.

Go to our fundraising pages.

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.