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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.


Sturge Weber Foundation (UK)


Address

Burleigh
348 Pinhoe Rd
Devon, EX4 8AF United Kingdom

Phone

1392464675

Fax

1392464675

Description

The Sturge Weber Foundation (UK) offers support to individuals affected by Sturge Weber syndrome and to their families. It raises both public and professional awareness of this syndrome, which is usually indicated by a port wine stain around the area of the eye and forehead, with similar blood vessels on the brain (angioma). People affected by the syndrome may also have epilepsy, increased pressure in the eye (glaucoma), and some children may have learning difficulties. Some may have a weakness or stiffness affecting one side of the body, similar in appearance to that of a stroke (hemiplegia). The foundation encourages and funds research at the Sturge Weber Clinic at Great Ormond Street Hospital in London. It hosts an annual family weekend conference.

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