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.
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Iron deficiency has been a hot topic at the online hemophilia summits I’ve attended recently, and it’s encouraging to see this important issue being addressed. Hemophilia doesn’t directly cause iron deficiency, but heavy menstrual bleeding can lead to iron loss. Women with hemophilia who experience heavy menstrual…
In Brazil, hemophilia markedly impairs patients’ quality of life and ability to work, with up to 82.6% of people with the disorder being unemployed, a review study finds. Barriers to treatment include long distances to centers, lack of coordination of specialized and emergency care, and restricted access to rehabilitation.
Last updated May 29, 2024, by Lindsey Shapiro, PhD Fact-checked by Joana Carvalho, PhD What is Kogenate FS for hemophilia? Kogenate (octocog alfa) was an approved treatment used to prevent bleeding episodes, including those occurring during surgery, in people with hemophilia A that has now…
The U.S. Food and Drug Administration (FDA) has cleared clinical testing in adults of BE-101, a B-cell treatment candidate for hemophilia B being developed by Be Biopharma. The Phase 1/2 trial, called BeCoMe-9, will be a first-in-human study designed to assess the safety and preliminary efficacy of BE-101…
I live in the small town of Punta Gorda, Florida. Though I have hemophilia B and von Willebrand disease, I don’t know anyone here or in the surrounding Charlotte County with a bleeding disorder. While living in such a community can present challenges when dealing with…
Stimate (desmopressin acetate) was a nasal spray developed to control bleeding in people with mild hemophilia A that has been recalled and currently is unavailable. The product was sold under the brand name Octim in Europe and Octostim in Canada.
Speaking at the Hemophilia Federation of America’s Mild Matters Summit last year, former Hemophilia News Today columnist Shellye Horowitz shared how her treatment plan changed after she researched the genetic variant that caused her hemophilia A. Although she’s classified as “mild,” her factor treatment…
Pfizer is preparing to launch its hemophilia B gene therapy Beqvez (fidanacogene elaparvovec-dzkt) after securing a U.S. approval for the treatment last month. Beqvez is the second gene therapy to be approved for adults with moderate to severe hemophilia B in the U.S., following the clearance of…
I was over the moon when my first son, Julian, was born in 1996. My baby was here, and life would never be the same. When Julian wouldn’t stop bleeding after his circumcision, the pediatrician was visibly shaken. Seeing a doctor with furrowed eyebrows is disconcerting. The next day,…