World Hemophilia Day is April 17, and this year it will focus on the challenges of women and girls living with hemophilia and other bleeding disorders. The World Federation for Hemophilia (WFH) said the theme of its campaign is “Access for all: women and girls bleed too.” “Today,…
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Sometimes I hear other women joke about their husbands being their “extra child,” and I can’t help but nod in understanding. Living with Jared, who has severe hemophilia B and a seizure disorder, means I occasionally slip into caregiver mode with him, too. But here’s what might surprise you:…
The gene therapy BBM-H901 (dalnacogene ponparvovec) has been approved in China for adults with moderate to severe hemophilia B, making it the first approved gene therapy for the disorder in the country. BBM-H901 was developed and will be manufactured by Belief Biomed (BBM), but it will be commercialized…
There are several types of hemophilia, a rare bleeding disorder wherein the blood fails to clot properly. Hemophilia A and B are the most common types, while hemophilia C is comparatively rare.
Health Canada has approved Altuviiio (efanesoctocog alfa) to treat children, adolescents, and adults with hemophilia A, with the aim of preventing and controlling bleeds, including those occurring around the time of surgery. “This approval represents important progress in the treatment of patients with hemophilia A in Canada,” Stephanie…
When I was diagnosed with hemophilia B and von Willebrand disease as a child, there were no choices in terms of treatment strategy. Treatment for me came in the form of intravenous blood products administered only in the hospital. Fast-forward to today, and I’m fortunate to have options…
The cost of the one-time hemophilia B gene therapy Hemgenix (etranacogene dezaparvovec) will now be covered for eligible patients in Germany through the country’s public healthcare system. This comes through a reimbursement price agreement between developer CSL Behring and GKV-Spitzenverband, the German National Association of Statutory Health…
Recombinate (antihemophilic factor recombinant) was a recombinant (lab-made) clotting factor VIII (FVIII) concentrate that was approved to prevent and control bleeds, including those occurring during surgery, in children and adults with hemophilia A. It was administered via intravenous, or into-the-vein, injection.
My alarm rings every day at 7 a.m. I get out of bed, brush my teeth, take my medications, and start my day. As the coffee maker begins to brew a fantastic cup of decaffeinated piñon coffee, I take my girls — my dogs, Laggie and Hildie — outside. I…