Roctavian (valoctocogene roxaparvovec-rvox), the first gene therapy approved for adults with severe hemophilia A, is expected to be widely available in the U.S. this month, according to its developer, BioMarin. BioMarin also is working with authorities in Germany, Italy, and France to secure market access to…
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Geneventiv Therapeutics said it had a “positive and constructive” meeting with the U.S. Food and Drug Administration (FDA) on its plan to develop GENV-HEM, a gene therapy for hemophilia A. The meeting “represents a key regulatory milestone for Geneventiv,” Damon Race, CEO of Geneventiv, said in a…
Health Canada has approved Hemlibra (emicizumab) for people with Hemophilia A without factor VIII inhibitors. Hemlibra is an antibody therapy that works by combining factors IX and X of the blood clotting cascade, effectively “replacing” the function of factor VIII, which is lacking in Hemophilia A patients. It is…
Ina Fowler, 68, of Brooksville, Florida, lives with several conditions, including hemophilia C, platelet dysfunction, atrial fibrillation, and peripheral artery disease. She recently suffered a brain bleed. To learn more about Ina’s journey, I spoke with her via Zoom. When Ina was in second grade, she hemorrhaged after a…
Precision BioLogic revealed promising data on a new kit for the measurement of FVIII inhibitors (factor VIII) in patients with hemophilia A. The results were presented at the International Society on Thrombosis and Haemostasis’ Scientific and Standardization Committee (SSC) meeting July 18-21 in Dublin, Ireland. Researchers presented their…
Hemophilia is a rare bleeding disorder. It leads to uncontrolled bleeding, hospitalizations, doctor visits, and the need for expensive medications. Bleeds result in costly absences from work and school. Receiving care at a federally funded hemophilia treatment center (HTC) is essential. Most hematologists focus on blood cancers or…
“It’s my party, and I’ll cry if I want to, cry if I want to, cry if I want to. You would cry too if it happened to you.” On Sept. 6, my birthday, this 1963 Lesley Gore song, “It’s My Party,” played in a continuous…
FEIBA is an approved treatment for patients with hemophilia A and B, some of whom may have stopped responding to replacement therapy.
Hemophilia, with its potential for spontaneous bleeding episodes and the need for regular medical interventions, can have a significant effect on the mental well-being of people living with this bleeding disorder.
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How Diet Can Help With Hemophilia Management
Eating well is important for everyone, but particularly for those living with hemophilia. Eating a diet that encourages strong bones and muscles and helps keep you at a healthy body weight is essential. MORE: Young boys explain what it’s like to live with hemophilia Obesity is becoming a major problem when it…