Hemorrhagic Telangiectasia, Hereditary

Synonyms

• 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.

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Resources

March of Dimes Birth Defects Foundation

1275 Mamaroneck Avenue

White Plains, NY 10605

Tel: (914)428-7100

Fax: (914)997-4763

Tel: (888)663-4637

Email: Askus@marchofdimes.com

Internet: http://www.marchofdimes.com



HHT Foundation International, Inc.

P.O. Box 329

Monkton, MD 21111

United States

Tel: (410)357-9932

Fax: (410)357-0655

Tel: (800)448-6389

Email: hhtinfo@hht.org

Internet: http://www.hht.org



NIH/National Heart, Lung and Blood Institute

31 Center Drive MSC 2480

Building 31A Rm 4A16

Bethesda, MD 20892-2480

Tel: (301)592-8573

Fax: (240)629-3246

Email: nhlbiinfo@rover.nhlbi.nih.gov

Internet: http://www.nhlbi.nih.gov/



MUMS (Mothers United for Moral Support, Inc) National Parent-to-Parent Network

150 Custer Court

Green Bay, WI 54301-1243

USA

Tel: (920)336-5333

Fax: (920)339-0995

Tel: (877)336-5333

Email: mums@netnet.net

Internet: http://www.netnet.net/mums/

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders, Inc. ® (NORD). A copy of the complete report can be obtained for a small fee by visiting the NORD website. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational treatments (if available), and references from medical literature. For a full-text version of this topic, see http://www.rarediseases.org/search/rdblist.html

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 www.rarediseases.org or email orphan@rarediseases.org

Last Updated:  4/2/2008

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