The Coalition for Hemophilia B’s (www.hemob.org) mission is to make the quality of life the focal point of treatment for people with hemophilia B and their families through education, empowerment, advocacy, and outreach. For 30 years we have driven our mission through a family-oriented approach because hemophilia affects the whole family.
Hemophilia is a disorder in which the blood does not clot properly. The two most common types, hemophilia A and hemophilia B, are caused by defective or missing proteins that are part of the clotting system, also called the coagulation cascade. In hemophilia B, the defective or missing protein is called factor IX.
Hemophilia was originally thought to be a disorder that affects primarily males, but a significant number of females are now properly being diagnosed as having hemophilia. There are several other bleeding disorders, most caused by defects in or the absence of other proteins of the clotting system. The most common of these is von Willebrand disease. Most of the others are extremely rare.
There is no cure for hemophilia B or other bleeding disorders. They are treated primarily with replacement therapies, usually clotting factor, although many new therapies are in the late stages of development. The original clotting factor products were made primarily from human plasma, although today most patients use products made through recombinant technology. However, some patients still use plasma-derived therapies.
You can find the Coalition for Hemophilia B's blog here: www.facebook.com/HemophiliaB.
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