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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



Phone

973-895-4445

Fax

973-895-4846

800 Number

800-627-5482

Email Address

swf@sturge-weber.org

Description

The Sturge-Weber Foundation (SWF) is a non-profit, 501(c)3 organization for parents, professionals, and others concerned with port wine stains, Sturge-Weber syndrome (SWS), and Klippel-Trenaunay (KT) syndrome. A congenital disorder of unknown cause, SWS is characterized by facial discoloration and neurological abnormalities. Established in 1987, the Sturge-Weber Foundation is dedicated to acting as a clearinghouse for information on all aspects of port wine stain conditions and Sturge-Weber syndrome, and offering support to all interested parties. The group seeks to educate the medical community, government agencies, and the general public; promote the funding of ongoing medical research; and establish a registry of affected individuals. The Sturge-Weber Foundation provides appropriate referrals and offers a variety of educational and support materials. These include a resource guide, medical articles, and brochures on all aspects of Sturge-Weber syndrome. Other educational resources available from the foundation include booklets, physical recommendation papers, a newsletter, and monthly enews.

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