WDSG-UK was founded in the year 2000 by Caroline Simms (PhD) and Linda Hart, to provide a support network for Wilson's disease patients, their families and friends.
A support group for all . . .
The Wilson's Disease Support Group - UK is an all volunteer organisation which strives to promote the well-being of patients with Wilson's Disease and their families and friends.
The organisation aims to provide informative articles about the nature of the disease, articles written by patients, families and friends about their experiences of the disease, recent progress in treatment and much more, by way of a biannual newsletter.
The organisation also aims to promote networking of WD patients and their families by helping and encouraging them to correspond with each other.
Finally, the organisation strives to generate a wider awareness of Wilson¹s Disease and its diagnosis within the medical profession.
What we do
The organisation aims to provide patient support and aims to provide and promote education and outreach.
- Maintains a membership list which includes patients, their families, their friends, and any other individuals and organisations interested in the disease
- Sends an annual newsletter containing information about the disease
- Provides a network for written and phone communication between affected individuals and their families.
Education and Outreach:
- Answers questions from the public about the disease
- Provides relevant information for professionals to heighten awareness of the disease and to educate people about the disease.
- Offers advice on referral to doctors and resources for patients with Wilson's Disease
- Distributes pamphlets and other information to genetics clinics and other professional groups for distribution to patients and their families
- Promotes public awareness of Wilson's Disease through media coverage
- Co-operates with investigators to advance research into Wilson's Disease.