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Hemorrhagic Telangiectasia, Hereditary
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Copyright 1986, 1988, 1989, 1994, 1995, 1996, 1997, 1999, 2000, 2001, 2002, 2003
Synonyms of Hemorrhagic Telangiectasia, Hereditary
- HHT
- Osler-Weber Rendu Syndrome
- Rendu-Osler-Weber Syndrome
Disorder Subdivisions
- Hereditary Hemorrhagic Telangiectasia Type I
- Hereditary Hemorrhagic Telangiectasia Type II
- Hereditary Hemorrhagic Telangiectasia Type III
General Discussion Hereditary hemorrhagic telangiectasia (HHT or Osler-Weber-Rendu syndrome) is a rare inherited disorder characterized by malformations of various blood vessels (vascular dysplasia), usually resulting in excessive bleeding (hemorrhaging). Chronic nosebleeds are often the first apparent symptom associated with hereditary hemorrhagic telangiectasia. Malformation of various blood vessels may result in abnormalities affecting various organ systems of the body including the lungs, brain, and liver. Hereditary hemorrhagic telangiectasia is inherited as an autosomal dominant trait. .
Organizations related to Hemorrhagic Telangiectasia, Hereditary
- 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
- HHT Foundation International, Inc.
P.O. Box 329
Monkton MD 21111
Phone #: 410-357-9932
800 #: 800-448-6389
e-mail: hhtinfo@hht.org
Home page: http://www.hht.org
- 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
- March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains NY 10605
Phone #: 914-997-4488
800 #: 888-663-4637
e-mail: Askus@marchofdimes.com
Home page: http://www.marchofdimes.com
- NIH/National Heart, Lung and Blood Institute
31 Center Drive MSC 2480
Building 31A Rm 4A16 Bethesda MD 20892-2480
Phone #: 301-592-8573
800 #: --
e-mail: nhlbiinfo@rover.nhlbi.nih.gov
Home page: http://www.nhlbi.nih.gov/
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