348 Pinhoe Road
Tel: 01392 464 675
The Sturge-Weber UK was formed in 1990 by a committee of volunteers after being brought together by Contact-A-Family, an umbrella charity based in London. The group's aims are as follows:
- To support sufferers of Sturge-Weber syndrome and their families.
- To promote research and raise both public and professional awareness of the syndrome.
- To raise funds in order to achieve the other aims.
The group continues to be run by volunteers, most of whom have children with Sturge-Weber syndrome. It produces a newsletter twice a year and has an information leaflets. Membership continues to grow and members can now be connected by one of a network of regional family contacts. There is an annual family weekend which gives parents the chance to meet and support each other as well as professionals speaking on different aspects of the syndrome.
Last updated on 08/11/2013