Grampian CareData

Sturge Webber UK

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Record Number: 6213

Address:
Burleigh
348 Pinhoe Road
Exeter
Devon
EX4 8AF

Phone: 01392 464675

Email: support@sturgeweber.org.uk Website: http://www.sturgeweber.org.uk/

Services

Sturge Weber UK is a voluntary support group for families and adults affected by Sturge Weber syndrome, a rare neurological disorder.  

Sturge Weber syndrome 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.

Aims

  • To provide support and information on differents aspects of the syndrome and to raise both public and professional awareness of the condition.

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  • 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

More Information

Area Covered: Aberdeen / Aberdeenshire / Moray

Aberdeenshire Coverage: Banff & Buchan / Buchan / Formartine / Garioch / Kincardine & Mearns / Marr

Cost of Service:

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

Registered Charity No.: 1016688

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Last Updated: 2017-07-03 09:25:10   
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