NORD's
Washington Office
 Read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.
|
|
|
The National Organization for Rare Disorders (NORD) web site, its databases,
and the contents thereof are copyrighted by NORD. No part of the NORD web
site, databases, or the contents may be copied in any way, including but not
limited to the following: electronically downloading, storing in a retrieval
system, or redistributing for any commercial purposes without the express
written permission of NORD. Permission is hereby granted to print one hard
copy of the information on an individual disease for your personal use,
provided that such content is in no way modified, and the credit for the
source (NORD) and NORD’s copyright notice are included on the printed copy.
Any other electronic reproduction or other printed versions is strictly
prohibited.
The information in NORD's Rare Disease Database is for educational purposes only. It
should never be used for diagnostic or treatment purposes. If you have questions regarding
a medical condition, always seek the advice of your physician or other qualified health
professional. NORD's reports provide a brief overview of rare diseases. For more specific
information, we encourage you to contact your personal physician or the agencies listed as
"Resources" on this report.
Copyright 1986, 1987, 1988, 1989, 1991, 1993, 1996, 1997, 1998, 1999, 2002, 2005, 2006
Synonyms of Sturge Weber Syndrome
- Dimitri Disease
- Encephalofacial Angiomatosis
- Encephalotrigeminal Angiomatosis
- Leptomeningeal Angiomatosis
- Meningeal Capillary Angiomatosis
- Sturge-Kalischer-Weber Syndrome
- Sturge-Weber Phakomatosis
- SWS
Disorder Subdivisions
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.
Organizations related to Sturge Weber Syndrome
- Arc (a national organization on mental retardation)
1010 Wayne Ave
Suite 650
Silver Spring MD 20910
Phone #: 301-565-3842
800 #: 800-433-5255
e-mail: info@thearc.org
Home page: http://www.thearc.org/
- Enjolras, Odile, M.D.
Department of Dermatology
Hospital Tarnier
Paris None None
Phone #: --
800 #: --
e-mail: N/A
Home page: N/A
- Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg MD 20898-8126
Phone #: 301-251-4925
800 #: 888-205-2311
e-mail: ordr@od.nih.gov
Home page: http://rarediseases.info.nih.gov/Default.aspx
- Hemispherectomy Foundation
P.O. Box 1239
Aledo TX 76008
Phone #: 817-307-9880
800 #: N/A
e-mail: info@hemifoundation.org
Home page: http://hemifoundation.intuitwebsites.com/welcome.html
- MUMS (Mothers United for Moral Support, Inc) National Parent-to-Parent Network
150 Custer Court
Green Bay WI 54301-1243
Phone #: 920-336-5333
800 #: 877-336-5333
e-mail: mums@netnet.net
Home page: http://www.netnet.net/mums/
- Madisons Foundation
PO Box 241956
Los Angeles CA 90024
Phone #: 310-264-0826
800 #: N/A
e-mail: getinfo@madisonsfoundation.org
Home page: http://www.madisonsfoundation.org
- National Institute of Neurological Disorders and Stroke (NINDS)
P.O. Box 5801
Bethesda MD 20824
Phone #: 301-496-5751
800 #: 800-352-9424
e-mail: me20t@nih.gov
Home page: http://www.ninds.nih.gov/
- National Organization of Vascular Anomalies
PO Box 38216
Greensboro NC 27438-8216
Phone #: N/A
800 #: N/A
e-mail: Khall@mail.novanews.org
Home page: http://www.novanews.org
- Sturge-Weber Foundation
PO Box 418
Mt. Freedom NJ 07970
Phone #: 973-895-4445
800 #: 800-627-5482
e-mail: swf@sturge-weber.org
Home page: http://www.sturge-weber.org
- Vascular Birthmarks Foundation
P.O. Box 106
Latham NY 12110
Phone #: N/A
800 #: 877-823-4646
e-mail: hvbf@aol.com
Home page: http://www.birthmark.org
|
|
