It’s rewarding to be able to serve my fellow people with hemophilia. I have often mentioned the Hemophilia Association of the Philippines for Love and Service (HAPLOS) in my writing. I want to dive deeper into the work that we youth members do to serve our community. Honestly, I…

Shire is developing a potential new strategy to improve the effectiveness of genetic delivery of clotting factor VIII (FVIII) for the treatment of patients with hemophilia A, and clotting factor IX (FIX) for patients with hemophilia B. The most recent findings on these new therapeutic strategies and the latest…

My mighty warrior Caeleb came home from school last week with a question. “Mom,” he asked, “my knee is really messed up, isn’t it?” I couldn’t see an injury, and so I asked him what he meant by “messed up.” “I can’t run really fast like everyone else in gym class,”…

My husband, Jared, and I are two weeks into our self-sufficiency journey. Just last week, our family moved into a rented condo. We spent some time and money to fix up the place and repair damages. So far, Jared’s handyman skills have improved a great deal. He likes that…

CSL Behring, a global biotherapeutics company focused on the development and delivery of innovative therapies that are used to treat coagulation disorders, announced this week that the European Commission has approved Idelvion (albutrepenonacog alfa), its long-acting albumin fusion protein for the treatment of bleeding in patients with hemophilia B…

The other day, I asked my husband, Jared, if he’d ever consider leading a harm reduction seminar for the teens in his hemophilia organization. His immediate response was, “Of course — but would the parents be ready for that conversation?” That question hit me. As…

My husband, Jared, and I have been working on some big home renovations lately. Under the supervision of my dad, who is a civil engineer, Jared learned how to do various jobs. He rerouted some water pipes, plugged up some holes, and painted. He also watched as an electrician installed…

The incidence of acquired hemophilia A (AHA) was nearly twice as high in Hong Kong than in Caucasian populations previously observed, a study found. Patients in Hong Kong tended to be older and have co-existing medical conditions, with age being a significant predictor of mortality and failure to achieve…

Screening for clinical trials in gene therapy can exclude the vast majority — 92% — of severe hemophilia patients, for reasons too often due to potentially modifiable factors such as socioeconomic status and location, a study of patients at a treatment center in Belgium reported. Patients’ unwillingness to…

Second in a series. Read part one. In my last column, hemophilia awareness advocate Lee Hall shared memories of a childhood shaped by hospital stays, difficult infusions, and the early days of hemophilia treatment. For many readers, those experiences may already feel unimaginable compared with the care…