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.
There are varying numbers of people in the UK with the different GSD Types, ranging from none to a few hundred. Wherever possible we appoint a volunteer Type Coordinator to act as a central point of contact and source of information on each Type.
The work load of the GSD Type Coordinators varies according to the number of GSD Type 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 Type Coordinators meet formally three times per year, in addition to any of their activities during the year. The minutes of their meetings are available here. These are unpaid roles. We would welcome volunteers to assist with the GSD Types not listed here.
GSD Type I (Von Gierke) - Sue Del Mar - firstname.lastname@example.org
GSD Type I Children - Kate Beuve - email@example.com
GSD Type II (Pompe) - Allan Muir - firstname.lastname@example.org
GSD Type III (Cori) - Esther James - email@example.com
GSD Type IV (Andersen) - Larissa Lowe - firstname.lastname@example.org
GSD Type V (McArdle) - Andrew Wakelin - email@example.com
GSD Type VII (Tarui) - Marilyn Silver - firstname.lastname@example.org
GSD Type IX - Angie Shaw - email@example.com
Association for Glycogen Storage Disease (UK) LimitedRegistered Charity No 1132271