15th April 2015

International Pompe Day

 

Pompe Update

Healthcare at Home

Deliveries Statement

 

GSD Giant 2015 

Annual cyclo-sportive.

6th September 2015

The Petersfield School

100, 64, 32 mile options

 

GSD Giant website
  

 

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.

Type Coordinators

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 - type1@agsd.org.uk


GSD Type II (Pompe) - Allan Muir - type2@agsd.org.uk


GSD Type III (Cori) - Esther James - type3@agsd.org.uk


GSD Type IV (Andersen) - Larissa Lowe - type4@agsd.org.uk


GSD Type V (McArdle) - Andrew Wakelin - type5@agsd.org.uk


GSD Type VII (Tarui) - Marilyn Silver - type7@agsd.org.uk


GSD Type IX - TBA - type9@agsd.org.uk