Services provided:
Wilson’s Disease is a genetic disorder in which copper builds up in the body, mainly in the liver and brain. Without any treatment, the build-up of copper can cause serious symptoms. Treatment is with medication to remove the excess copper and/or to prevent a further build-up of copper.
The organisation aims to provide patient support and aims to provide and promote education and outreach.
Patient Support:
- 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.
Address
Website: http://www.wilsonsdisease.org.uk
Email: val@wilsonsdisease.org.uk
