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.
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Hemophilia treatment can be costly, but understanding insurance options and financial assistance programs may help reduce the burden. This resource highlights key costs and support tools to help you better manage care expenses.
My husband, Jared, had a knee bleed last week. The moment he felt the familiar twinge in his joint, he performed his usual treatment regimen: a factor infusion and bed rest. We thought we’d simply wait it out without doing anything special besides resting the injury…
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13 Fast Facts About Hemophilia
Hemophilia is a rare inherited disease where a person is lacking a certain type of clotting factor. This means that their blood is unable to clot so injuries will result in extensive bleeding. If left untreated, this bleeding can become life-threatening. Here are a few fast facts about this rare…
Creating personalized hemophilia B care is an important part of hemophilia B management.Your healthcare team can set up a treatment plan based on your specific needs and the severity of your symptoms.
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Explaining Hemophilia A and B
https://www.youtube.com/watch?v=S_YMGmHqIW4 This video from Claire Blatt shares a lecture about the effects of two blood-clotting disorders: hemophilia A and hemophilia B. MORE: A study shows that NovoSeven counters bleeding in children with hemophilia Though the lecture is aimed at nurses, it’s helpful for anyone looking to learn about these…
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What Life With Hemophilia Means to These Patients
In this video from the Bleeding Disorders Community, hemophilia patients and their families talk about how the disease has affected their lives but more importantly, how they haven’t let the disease redefine who they are as people. MORE: Three tips for coping with a hemophilia…
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.