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Advocacy doesn’t always mean protests or politics; sometimes it begins with a parent learning everything they can to protect their child. One mother shares how speaking up for her sons with hemophilia helped teach them to one day speak for themselves.
Connecting with others affected by hemophilia B can help you find a community with whom you can share what it’s like living with hemophilia B, including talking about daily life, symptoms, and treatments.
While hemophilia A and hemophilia B are both bleeding disorders characterized by deficiencies in blood clotting factors, there are differences in one type versus the other, particularly in the specific genetic mutations that cause the disease, and in some of the treatment methods.
An enzyme called activate protein C (APC), which prevents the formation of blood clots and therefore promotes bleeding could be targeted to treat hemophilia, suggests a study conducted by researcher at the University of Cambridge and the Children’s Hospital of Philadelphia.
My Life, Our Future (MLOF), a national program founded by leaders in the hemophilia and blood disorder community, marked Feb. 28 — Rare Disease Day — by launching the world’s largest research repository of its kind to researchers and scholars. The program is opening to U.S. scientists and will expand to worldwide scientists in 2018.
Hemophilia B is a rare genetic bleeding disorder that impairs the blood’s ability to clot properly.
Continuous into-the-vein (intravenous) infusions of Advate immediately before and after major orthopedic surgery is as safe and effective as standard, short, bolus infusions at preventing bleeds in men with moderate-to-severe hemophilia A. That finding from a Phase 3/4 clinical trial — the first controlled trial to compare the two types…