The AGSD-UK provides support and help for children, adults and families living with any one of the extremely rare Glycogen Storage Diseases (GSDs). It does this by providing them with information about their condition, putting them in contact with other families, and holding conferences, workshops and courses. The charity employs two part-time staff and one full-time family support nurse. The AGSD-UK currently supports around 500 patients and their families in the UK. Funds raised through Call and Give would help us to provide greatly improved support to many more of these families at a very distressing time for them.

Family support

When a child or adult is diagnosed with a rare disorder they have an urgent need for information in an easy-to-understand form. They will often be in a state of shock and will need reassurance and emotional support for several weeks afterwards. They may not fully understand all of the medical jargon given at their initial consultation and so will benefit from the advocacy support of our charity. Having the support of people who have already lived through that experience and can help the family come to terms with the disease and understand the complex care needed to keep their child healthy.

Glycogen

Glycogen is a stored form of glucose, a sugar used as a fuel for energy especially in the brain and in muscles. Glycogen Storage Disease (GSD) occurs when there is an absence or deficiency of an enzyme needed to produce or break down glycogen in the liver or in the muscles. There are currently ten main GSD types and the most common of these are described on our charity website www.agsd.org.uk.

GSD Giant sportive - Goodwood, West Sussex, 7th September 2014

GSD Giant is a charity cyclo-sportive through the picturesque lanes of West Sussex and Hampshire, with profits going to the AGSD-UK. This event starts and finishes at the magnificent Goodwood Racecourse in the heart of the South Downs National Park.