National Organization for Rare Disorders, Inc.
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.
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.
National Hemophilia Foundation
116 West 32nd Street, 11th Floor
New York, NY 10001
Canadian Hemophilia Society
400-1255 University Street
Quebec, H3B 3B6
NIH/National Heart, Lung and Blood Institute
P.O. Box 30105
Bethesda, MD 20892-0105
World Federation of Hemophilia
1425 René Lévesque Blvd. W. Suite 1010
Quebec, Intl H3G 1T7
Tel: +1 (514) 875-7944
Fax: +1 (514) 875-8916
Hemophilia Federation of America
210 7th St. SE
Washington, DC 20003
MUMS National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243
Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg, MD 20898-8126
PO Box 241956
Los Angeles, CA 90024
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This is an abstract of a report from the National Organization for Rare Disorders (NORD). A copy of the complete report can be downloaded free from the NORD website for registered users. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational therapies (if available), and references from medical literature. For a full-text version of this topic, go to MyD-H, the Dartmouth-Hitchcock patient portal. You must be a registered MyD-H user for the Lebanon, Manchester, or Nashua locations to access this site.
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.
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Last Updated: 9/18/2008
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