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)328-3737
Fax: (212)328-3795
Tel: (800)424-2634
Email: handi@hemophilia.org
Internet: http://www.hemophilia.org

Canadian Hemophilia Society
625 President Kennedy
Suite 505
Montreal
Quebec, H3A 1K2
Canada
Tel: 5148480503
Fax: 5148489661
Tel: 8006682686
Email: chs@hemophilia.ca
Internet: http://www.hemophilia.ca

NIH/National Heart, Lung and Blood Institute Information Center
P.O. Box 30105
Bethesda, MD 20824-0105
Tel: (301)592-8573
Fax: (301)251-1223
Email: nhlbiinfo@rover.nhlbi.nih.gov

World Federation of Hemophilia
1425 Rene Levesque Boulevard West
Suite 1010
Montreal
Quebec, Intl H3G 1T7
Canada
Tel: 514-875-7944
Fax: 514-875-8916
Email: wfh@wfh.org
Internet: http://www.wfh.org

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: ordr@od.nih.gov
Internet: http://rarediseases.info.nih.gov/Default.aspx

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

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

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