Hemophilia B

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Hemophilia B

National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Hemophilia B is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report.

Synonyms

  • Christmas Disease
  • Factor IX Deficiency

Disorder Subdivisions

  • None

General Discussion

Hemophilia B is a rare genetic bleeding disorder in which affected individuals have insufficient levels of a blood protein called factor IX. Factor IX is a clotting factor. Clotting factors are specialized proteins that are essential for clotting, the process by which blood clumps together to plug the site of a wound to stop bleeding. Individuals with hemophilia B do not bleed faster or more profusely than healthy individuals, but, because their blood clots poorly, they have difficulty stopping the flow of blood from a wound. This may be referred to as prolonged bleeding or a prolonged bleeding episode. Hemophilia B can be mild, moderate or severe. In mild cases, prolonged bleeding episodes may only occur after surgery or dental procedures. In more severely affected individuals, symptoms may include prolonged bleeding from minor wounds, painful swollen bruises, and unexplained (spontaneous) bleeding into vital organs as well as joints and muscles . Hemophilia B is caused by disruptions or changes (mutations) to the F9 gene on the X chromosome. The disorder is almost always fully expressed in males only, although some females who carry the gene may have mild or ,rarely, severe symptoms of bleeding. Hemophilia B is also known as factor IX deficiency or Christmas disease.

Resources

National Hemophilia Foundation
116 West 32nd Street, 11th Floor
New York, NY 10001
USA
Tel: (212)328-3700
Fax: (212)328-3777
Tel: (800)424-2634
Email: handi@hemophilia.org
Internet: http://www.hemophilia.org

Canadian Hemophilia Society
400-1255 University Street
Montreal
Quebec, H3B 3B6
Canada
Tel: 514-848-0503
Fax: 514-848-9661
Tel: 800-668-2686
Email: chs@hemophilia.ca
Internet: http://www.hemophilia.ca

NIH/National Heart, Lung and Blood Institute
P.O. Box 30105
Bethesda, MD 20892-0105
Tel: (301)592-8573
Fax: (301)251-1223
Email: nhlbiinfo@rover.nhlbi.nih.gov
Internet: http://www.nhlbi.nih.gov/

World Federation of Hemophilia
1425 René Lévesque Blvd. W. Suite 1010
Montreal
Quebec, Intl H3G 1T7
Canada
Tel: +1 (514) 875-7944
Fax: +1 (514) 875-8916
Email: wfh@wfh.org
Internet: http://www.wfh.org/index.asp?lang=EN

Hemophilia Federation of America
210 7th St. SE
Suite 200B
Washington, DC 20003
USA
Tel: (202)675-6984
Fax: (202)675-6983
Tel: (800)230-9797
Email: info@hemophiliafed.org
Internet: http://www.hemophiliafed.org

MUMS 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/

Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg, MD 20898-8126
Tel: (301)251-4925
Fax: (301)251-4911
Tel: (888)205-2311
TDD: (888)205-3223
Email: http://rarediseases.info.nih.gov/GARD/EmailForm.aspx
Internet: http://rarediseases.info.nih.gov/GARD

Madisons Foundation
PO Box 241956
Los Angeles, CA 90024
Tel: (310)264-0826
Fax: (310)264-4766
Email: getinfo@madisonsfoundation.org
Internet: http://www.madisonsfoundation.org

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:  9/18/2008
Copyright  1987, 1988, 1989, 1995, 1996, 2000, 2007, 2008 National Organization for Rare Disorders, Inc.

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