Welcome

Danny (centre) with his cousins on holiday
Who we are
Sturge Weber UK is a voluntary support group for families and adults affected by Sturge Weber syndrome, a rare neurological disorder. A registered charity, it was launched in 1990 as a independent group by the disability support organisation Contact a Family.

Coronavirus Update

Following the most recent government guidelines on the coronavirus (COVID- 19) we have advised all our fundraisers who have planned events or challenges in the next few months to postpone them.
We are unable to support any public collections at this time. We have also decided to temporarily close our online store to limit the spread of the virus.  All our other services at SW UK will continue. Our social media pages will remain active and we want to assure you that throughout this time of uncertainty we will still do everything we can to support those affected with SWS and their families. You can contact us by email or telephone. Our thoughts are with you all at this very difficult time.

Sturge Weber syndrome
This is a rare disorder of unknown incidence and origin; although present at birth, it is NOT thought to be hereditary. Sturge Weber is usually indicated by a birthmark (port wine stain) somewhere on the face, usually involving the eye and forehead, also similar blood vessels on the brain, called an angioma. Those with SW often suffer from epilepsy, hemiplegia (a weakness or stiffness affecting one side of the body, similar in appearance to that of a stroke), glaucoma and learning difficulties. Symptoms usually occur in the child`s first year of life.

Membership
Membership is entirely free to professionals, anyone diagnosed with Sturge Weber syndrome and their families.

Aims
  • To provide support and information on differents aspects of the syndrome and to raise both public and professional awareness of the condition.
  • To promote medical research into the causes and treatment of this syndrome.
  • A Family Weekend is organised every eighteen months when doctors and other professionals talk about relevant topics.
  • A Newsletter is produced and information leaflets are available.