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Sturge Weber Syndrome

National Organization for Rare Disorders, Inc.


It is possible that the main title of the report Sturge Weber Syndrome is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report.


  • Dimitri Disease
  • Encephalofacial Angiomatosis
  • Encephalotrigeminal Angiomatosis
  • Leptomeningeal Angiomatosis
  • Meningeal Capillary Angiomatosis
  • Sturge-Kalischer-Weber Syndrome
  • Sturge-Weber Phakomatosis
  • SWS

Disorder Subdivisions

  • None

General Discussion

Sturge-Weber syndrome is composed of three major symptoms. Excessive blood vessel growths (leptomeningeal angiomas) are accompanied by accumulations of calcium inside the brain, and seizures. Facial birth marks (nevus flammeus) appear usually on one side of the face. Angiomas similar to those found in the brain can develop inside the eye, often with secondary glaucoma. Hormone abnormalities have also been found to occur equally in males and females.


The Arc

1825 K Street NW, Suite 1200

Washington, DC 20006

Tel: (202)534-3700

Fax: (202)534-3731

Tel: (800)433-5255

TDD: (817)277-0553



Sturge-Weber Foundation

P.O. Box 418

Mt. Freedom, NJ 07970-0418

Tel: (973)895-4445

Fax: (973)895-4846

Tel: (800)627-5482



NIH/National Institute of Neurological Disorders and Stroke

P.O. Box 5801

Bethesda, MD 20824

Tel: (301)496-5751

Fax: (301)402-2186

Tel: (800)352-9424

TDD: (301)468-5981


Vascular Birthmarks Foundation

P.O. Box 106

Latham, NY 12110


Tel: (877)823-4646



Genetic and Rare Diseases (GARD) Information Center

PO Box 8126

Gaithersburg, MD 20898-8126

Tel: (301)251-4925

Fax: (301)251-4911

Tel: (888)205-2311

TDD: (888)205-3223


Madisons Foundation

PO Box 241956

Los Angeles, CA 90024

Tel: (310)264-0826

Fax: (310)264-4766



National Organization of Vascular Anomalies

PO Box 38216

Greensboro, NC 27438-8216



Hemispherectomy Foundation

P.O. Box 1239

Aledo, TX 76008

Tel: (817)307-9880



Venous Disease Coalition

1075 S. Yukon Street, Suite 320

Suite 320

Lakewood, CO 80226

Tel: (303)989-0500

Fax: (303)989-0200

Tel: (888)833-4463



For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders (NORD). A copy of the complete report can be downloaded free from the NORD website for registered users. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational therapies (if available), and references from medical literature. For a full-text version of this topic, go to and click on Rare Disease Database under "Rare Disease Information".

The information provided in this report is not intended for diagnostic purposes. It is provided for informational purposes only. NORD recommends that affected individuals seek the advice or counsel of their own personal physicians.

It is possible that the title of this topic is not the name you selected. Please check the Synonyms listing to find the alternate name(s) and Disorder Subdivision(s) covered by this report

This disease entry is based upon medical information available through the date at the end of the topic. Since NORD's resources are limited, it is not possible to keep every entry in the Rare Disease Database completely current and accurate. Please check with the agencies listed in the Resources section for the most current information about this disorder.

For additional information and assistance about rare disorders, please contact the National Organization for Rare Disorders at P.O. Box 1968, Danbury, CT 06813-1968; phone (203) 744-0100; web site or email

Last Updated:  5/1/2008

Copyright  1986, 1987, 1988, 1989, 1991, 1993, 1996, 1997, 1998, 1999, 2002, 2005, 2006 National Organization for Rare Disorders, Inc.

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