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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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Copyright 1988, 1989, 1995, 2003, 2007, 2008
NORD is very grateful to Leslie G Biesecker, MD, Chief, Genetic Diseases Research Branch, National Human Genome Research Institute, National Institutes of Health, for assistance in the preparation of this report.
Synonyms of Proteus Syndrome
Disorder Subdivisions
General Discussion
Proteus syndrome is a rare disorder characterized by overgrowth of various tissues of the body. The cause of the disorder is unknown. Disproportionate, asymmetric overgrowth occurs in a mosaic pattern (i.e., a random "patchy" pattern of affected and unaffected areas). Affected individuals may experience a wide variety of complications that may include progressive skeletal malformations, benign and malignant tumors, malformations of blood vessels (vascular malformations), bullous pulmonary disease, and certain skin lesions. In some cases, life-threatening conditions relating to abnormal blood clotting may develop including deep vein thrombosis and pulmonary embolism.
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Organizations related to Proteus 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: ordr@od.nih.gov
Home page: http://rarediseases.info.nih.gov/Default.aspx
- Hemihypertrophy Support
4581 Magnolia Dr.
Suffolk VA 23435
Phone #: 757-615-3686
800 #: N/A
e-mail: hemihypertrophy@yahoogroups.com
Home page: http://www.hemisupport.com
- 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
- 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
- Proteus Syndrome Foundation
4915 Dry Stone Drive
Colorado Springs CO 80918
Phone #: 719-264-8445
800 #: --
e-mail: kimhoag01@comcast.net
Home page: http://www.proteus-syndrome.org
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