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Healthcare at Home
7th September 2014
Goodwood, West Sussex
104, 76, 44 mile options
GSD Giant website
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) - Kastur Pindolia - firstname.lastname@example.org
GSD Type II (Pompe) - Allan Muir - email@example.com
GSD Type III (Cori) - Esther James - firstname.lastname@example.org
GSD Type IV (Andersen) - Larissa Lowe - email@example.com
GSD Type V (McArdle) - Andrew Wakelin - firstname.lastname@example.org
GSD Type VII (Tarui) - Marilyn Silver - email@example.com
GSD Type IX - TBA - firstname.lastname@example.org
Association for Glycogen Storage Disease (UK) LimitedRegistered Charity No 1132271