Researchers investigated self-reported health-related quality of life (HrQoL) in children and adolescents with hereditary bleeding disorders, such as hemophilia A, and found no differences between patients and their healthy siblings and peers. The research paper, titled “Health-Related Quality of Life in Children and Adolescents with Hereditary Bleeding Disorders…
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SPK-8011, also known as dirloctocogene samoparvovec, is an experimental gene therapy for hemophilia A. Given as a one-time intravenous or into-the-vein, infusion, it aims to reduce the risk of bleeds in patients.
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…
Treatment of hemophilia A with bypassing agents is associated with significantly higher costs than with factor replacement therapy, according to a real-world study in the U.S. The study, “Healthcare costs among patients with hemophilia A treated with factor replacement or bypassing agents,” appeared in…
Total joint replacement (TJR) is more common in severe hemophilia patients requiring more frequent treatment, according to a population-based study in Taiwan. The findings also revealed that the incidence of TJR does not differ between hemophilia A and B. The study, “Comparison of Total Joint…
Long-term treatment with Novoeight (turoctocog alfa) is safe and effective at preventing bleeding episodes in patients with hemophilia A of all ages who had already received prior treatment, a Phase 3b extension trial shows. The study, “Long‐term safety and efficacy of turoctocog alfa in prophylaxis and treatment…
An immersive multimedia exhibit, which features portraits by renowned photographer Rankin, seeks to educate about life with hemophilia and the disease community’s hope for the future. The exhibit, called “Portraits of Progress,” is a collaboration between biotherapeutics company CSL Behring and Rankin, a British photographer who has done…
People with hemophilia showed no heightened protection against COVID-19 severity or mortality, a large retrospective U.S. outcomes study found. “Having hemophilia was not a risk factor for death,” the researchers wrote, noting, however, that hemophilia patients “were more likely to have moderate COVID-19 severity and to be hospitalized.” Older…