The AGSD-UK 2015 conference was a great success:

I can't thank you and the AGSD-UK team enough for the superb organisation of the conference this year! The workshops and range of speakers was fantastic. It was so good to meet the key physicians who are helping with the condition. Another incredible outcome of the conference was that our daughter made two friends the same age as her whom we intend to meet with and to keep in contact with. As the condition is rare it is invaluable that she has friends to share her struggles with. It is also great that my husband and I now have friends who are GSD parents too! What a fantastic thing you do - thank you so much, from all of us!
– Victoria

 

Types of Glycogen Storage Disease

The AGSD-UK tries to help with all GSD Types. There are currently nine main types of Glycogen Storage Disease. Some have sub types. Use the links below or the ones in the left panel to read about each type. The other forms of GSD have very small numbers of people affected, we hope to add information about them here in due course.

Volunteer GSD Coordinators

There are varying numbers of people in the UK with the different GSDs, ranging from none to a few hundred. Wherever possible we appoint a volunteer Coordinator to act as a central point of contact and source of information on each GSD.

The work load of each GSD Coordinator varies according to the number of GSD members, their needs and the level of professional activity such as clinics, treatments, research, etc. These are voluntary roles and it may not be possible, or even relevant, for all co-ordinators to undertake all of the role description.

The GSD Coordinators meet formally three times per year, in addition to any of their activities during the year. These are unpaid roles. We would welcome volunteers to assist with any GSDs not listed here.


GSD 0  - Abbie Maguire


GSD I (Von Gierke) - Kastur Pindolia


GSD II (Pompe) - Allan Muir 


GSD III (Cori) - Esther James


GSD IV (Andersen) - Larissa Lowe


GSD V (McArdle) - Andrew Wakelin


GSD VI (Hers) - Caroline Calder


GSD IX - Dan Machin


 

To contact any of our GSD Coordinators, please visit our Contacts Page and select them from the drop-down box.