All the various Glycogen Storage Diseases are ultra-rare conditions. In the UK they each have patient numbers from 0 to around 350. Many are in the 0 to 20 range. The most rare GSDs usually have very little information available and almost no research or detailed understanding by the medical world. 

Differing needs and possibilities

There is significant difference between the GSDs as to the needs of the people affected. For example, some GSDs can lead to critical illness or severe disability, whereas others may be more of an inconvenience. Some of the GSDs have nationally commissioned NHS specialist centres supporting people with that GSD or a group of GSDs, whereas others have very little specialist support, if any.

Sharing support

All the GSDs are metabolic conditions that then fall into three groups: hepatic, hepatic/ketotic and neuromuscular, and can therefore share a certain degree of services, support and knowledge. Pompe disease (GSD2) is also a lysosomal storage disorder (LSD) and thus shares with support groups for other LSDs.

Visit the UK LSD Patient Collaborative web site.

We work positively in partnership with a range of UK and international organisations with an interest in promoting the wellbeing of peoplr with GSDs and other rare conditions.

All GSDs included

AGSD-UK works across the board for all the GSDs, doing what we can to provide information and support within the constraints as already outlined. Gradually the boundaries for each GSD are being pushed back and as this happems more support and information becomes possible.

Shared overheads

For any support group there is a significant overhead of voluntary effort and finance needed to cover administration, governance, reporting and legal requirements. With all GSDs in one association we minimise and share these overheads. The GSDs with the greater numbers, and those with avenues to funding, shoulder a large part of the overheads and make it possible for the most rare GSDs to have some support.