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Our events for patients and families

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.

Choose from our types of event

Calendar of events

Date/s Event Who for

2019

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.
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

2020

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

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.

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”.

Go to our walking course information.

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. For 2019 we have 22 places in the Prudential Ride London Surrey event.

Go to our fundraisng pages.

Annual conference and workshops.

Conferences

Our AGSD-UK Annual Conference is held each autumn at locations rotating around the country. 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 in locations around the UK each year.

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.

Go to the Children & Parents event page.