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 Read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.
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"Resources" on this report.
Copyright 1989, 1996, 1998, 2007
NORD is very grateful to Steven J. Fishman, MD, Co-Director, Vascular Anomalies Center, Children's Hospital Boston and Associate Professor of Surgery, Harvard Medical School, for assistance in the preparation of this report.
Synonyms of Blue Rubber Bleb Nevus Syndrome
Disorder Subdivisions
General Discussion
Blue rubber bleb nevus syndrome (BRBNS) is a rare blood vessel (vascular) disorder that affects the skin and internal organs of the body. Multiple distinctive skin lesions are usually characteristic of this disorder and are often present at birth or present during early childhood. Lesions in the gastrointestinal tract frequently become apparent during childhood or early adulthood. The lesions are multifocal venous malformations, resulting from abnormal embryonic blood vessel development.
Organizations related to Blue Rubber Bleb Nevus Syndrome
- Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg MD 20898-8126
Phone #: 301-251-4925
800 #: 888-205-2311
e-mail: http://rarediseases.info.nih.gov/GARD/EmailForm.aspx
Home page: http://rarediseases.info.nih.gov/GARD
- NIH/National Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse
1 AMS Circle
Bethesda MD 20892-3675
Phone #: 301-495-4484
800 #: 877-226-4267
e-mail: NIAMSinfo@mail.nih.gov
Home page: http://www.niams.nih.gov/Health_Info
- Nevus Network
The Congenital Nevus Support Group
P.O. Box 305
West Salem OH 44287
Phone #: 419-853-4525
800 #: --
e-mail: info@nevusnetwork.org
Home page: http://www.nevusnetwork.org
- Nevus Outreach, Inc.
600 SE Delaware Ste. 200
Bartlesville OK 74006
Phone #: 918-331-0595
800 #: 877-426-3887
e-mail: mark@nevus.org
Home page: http://www.nevus.org
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