Helping you find the resources you need… these links will take you to the pages of our web site that can either answer your questions or point you in the right direction.
How do I help a GSD patient in A&E?
When a GSD patient needs to attend A&E (they might have for example hypoglycaemia, rhabdomyolysis or breathing difficulties) very often the emergency doctor will never before have seen someone with the same GSD. To help guide you quickly to the right information we have links under each of the GSDs.
I am new to GSD, what is it all about?
We have an introduction to Glycogen Storage Disease – a group of conditions in which the processing of glycogen in either liver or skeletal muscle is compromised. These are ultra-rare conditions and there is a greatly variable amount known about each one. The introduction will explain the different GSD variants and link to their pages.
I am in primary care, is there a training package for me?
The AGSD-UK assisted the Royal College of General Practitioners with their production of an eLearning course on both hepatic and muscle GSDs. It highlights how these conditions typically present to GPs and covers differential diagnosis and the role of specialist centres.
Where are the specialist centres for GSD?
Due to the ultra-rare nature of their condition it is necessary for GSD patients to be seen in specialist and treatment centres, where the staff have the expertise to advise them.
What is the latest research?
Research tends to be into one GSD variant at a time. Under each GSD variant we have a section entitled “Research & Development” – so that is the place to start on the GSD variant that you are interested in.
How do I meet other professionals interested in GSD?
The AGSD-UK organises an annual conference in the autumn of each year for patients, families and medical professionals. Clinicians and researchers are asked to present and it is also an opportunity for them to meet together. In addition, there are regular international conferences for GSDs, and we have information on our web site as they are announced.
What is the best way to contact AGSD-UK?
Depending on what your need is or what it is that you wish to discuss, we have many routes for contact for you to select from.