Who are we?
The Wilson's Disease Support Group - UK (WDSG-UK) is an all volunteer organisation co-founded by Caroline Simms and Linda Hart in 2000, and set up with the aim of supporting patients in the UK who are living with Wilson's disease (WD). Wilson's disease is a rare autosomal recessive inherited disorder of copper metabolism, which is characterised by hepatic, neurological and psychiatric symptoms. Worldwide, the disease affects around one in 30,000 individuals. It is fatal unless diagnosed and treated in time.
Copper is present in most foods and is an essential element for humans. In WD patients the biliary route for excretion of dietary copper is impaired and copper accumulates in the tissues: in the liver leading to progressive hepatic damage; in the brain leading to disturbances of the personality and destruction of motor function; in the cornea producing Kayser-Fleischer rings; and in the kidney giving rise to functional disturbances.We are registered with HMRC. Our Charity number is XT24332
Why we're raising money
Aims of the Wilson's Disease Support Group - UK (WDSG-UK
- To provide support for patients, their families and friends
- To provide a communications network for affected individuals, their families and friends
- To produce and distribute an annual newsletter for members and interested medical practitioners
- To provide and maintain an up-to-date website with information about the disease and details of how to join the Group (www.wilsonsdisease.org.uk)
- To hold an informal annual meeting for medical professionals, new and existing patients, and their families and friends
- To raise awareness of Wilson's disease especially amongst medical professionals
- To collect up-to-date information on research, treatment and management of the disease
- To raise funds for the Group's activities and to support/fund research into Wilson's disease