Resources- Specific Diagnosis Card Catalog- Sturge-Weber Syndrome

Related Disorders: Sturge-Weber-Dimitri Syndrome, Klippel Trenaunay Syndrome, Sturge-Weber Phakomatosis

Who to Contact

Sturge-Weber Foundation (SWF)
PO Box 418
Mt. Freedom, New Jersey, USA 07970
(973) 895-4445
(800) 627-5482
Fax: (973) 895-4846
E-mail: SWF@sturge-weber.com
Web: www.sturge-weber.com

The Sturge-Weber Foundation is a clearinghouse for information concerning Sturge-Weber Syndrome, Klippel Trenaunay, and Port Wine Stain Birthmarks. The Foundation provides support for parents and individuals with all three syndromes, educates the general public, medical profession, and government agencies, and funds research. The Foundation has local support groups and a directory in the form of area representatives and international resource contacts. They will assist individuals who wish to start a local chapter in their area and will provide parent-to-parent matching after receiving a signed permission form.

The Sturge-Weber Foundation publishes a quarterly newsletter, Branching Out, that is includes with membership fees, and has many articles, brochures and publications available including "SWS-A Kids Booklet," "Color Me Different-Color Me The Same," "Branching Out With Wisdom," a book of helpful hints from parents & grandparents, and a video "SWS-An Overview for Physicians and Families."

The Sturge-Weber Foundation offers a new parent packet that includes a copy of the newsletter, a pamphlet explaining Sturge-Weber Syndrome, a questionnaire, and a letter from the president of the Foundation. The Foundation collects information on physicians and researchers who treat/study the syndrome and make this information accessible to members. They provide information and referrals to other resources and mail packets to schools, hospitals, and clinics. The Sturge-Weber Foundation hosts a national conference; call for further information.

Where to Go Chat with Others

Sturge Weber Support
This International e-group is for the private use of The Sturge-Weber Foundation Membership. The SWF assists individuals and professionals seeking information on Sturge-Weber syndrome, Klippel-Trenaunay, and Port Wine Stains. In addition to this forum, the SWF member benefits include information on the latest research available, access to medical experts, family networking, publications, videos, etc.

SWC Talk Community
Support and Community group for families and individuals affected by Sturge-Weber Syndrome

Learn More About It

Sturge-Weber Syndrome Information Page
From the National Institute of Neurological Disorders and Stroke

Sturge-Weber Syndrome
from eMedicine

Sturge-Weber Article
from OMIM

Port Wine Stains and Women

Links

Sturge-Weber Foundation

Sturge-Weber Syndrome Community

Sturge Weber Foundation - United Kingdom

Sturge Weber Syndrome Support Group of New Zealand

Norwegian Foundation for Sturge-Weber syndrome (NFSW)