Synonyms of Hemophilia B- Christmas Disease
- Factor IX Deficiency
Disorder Subdivisions
General DiscussionHemophilia 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.
Organizations related to Hemophilia B- Canadian Hemophilia Society
625 President Kennedy
Quebec None H3A 1K2
Phone #: 514-848-0503
800 #: 800-668-2686
e-mail: [email protected]
Home page: http://www.hemophilia.ca
- Hemophilia Federation of America
1405 West Pinhook Road
Lafayette LA 70503
Phone #: 337-261-9787
800 #: 800-203-9797
e-mail: [email protected]
Home page: http://www.hemophiliafed.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: [email protected]
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: [email protected]
Home page: http://www.madisonsfoundation.org
- NIH/National Heart, Lung and Blood Institute Information Center
P.O. Box 30105
Bethesda MD 20824-0105
Phone #: 301-592-8573
800 #: --
e-mail: [email protected]
Home page: N/A
- National Hemophilia Foundation
116 West 32nd Street
New York NY 10001
Phone #: 212-328-3737
800 #: 800-424-2634
e-mail: gwidlundDhemophilia.org
Home page: http://www.hemophilia.org
- World Federation of Hemophilia
1425 Rene Levesque Boulevard West
Quebec Intl H3G 1T7
Phone #: 514--87-5-7944
800 #: --
e-mail: [email protected]
Home page: http://www.wfh.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