Note: This story was updated Jan. 20, 2026, to correct data on the number of boys on preventive FIX replacement therapy at the time of the analysis. Using longer-acting factor IX (FIX) products — known as extended half-life (EHL) products, or EHL-FIX — safely reduced factor use and helped children…
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Hemophilia is a disorder wherein the blood is not able to clot properly. As a result, patients bleed easily, and it's unusually prolonged and heavy.
My husband, Joe, and I recently officiated a marriage vow renewal for close friends in Santa Fe, New Mexico, one of our favorite places. We made a long weekend of it, spending time with friends, meeting new people, and enjoying each other’s company. The next morning, we had breakfast at…
People with hemophilia A and their caregivers, as well as healthcare providers, have shown a strong interest in a new blood-testing device being developed to make blood clotting tests faster and easier to access, according to a recent study. The device, called EnzySystem, allows for measuring the activity of…
I wasn’t doing anything unusual when it happened. I wasn’t exercising, rushing around, or kicking someone. I was simply walking around my house when I felt a sudden, sharp pain in the ball of my foot. Within seconds, it began to swell. A bruise appeared, purple, unmistakable, and completely uninvited.
A new study highlights a hidden emotional burden for families living with hemophilia: the deep sense of guilt felt by parents, particularly mothers, who pass the condition on to their children. However, researchers found that this weight can be significantly lifted through better access to medical information, professional counseling,…
The world often feels like an amusement park ride that does nothing but turn in circles, and we must gather the courage to get on. At first, everything spins at a moderate pace, but as the ride continues, the pace picks up, and suddenly everything spins so fast we can…
Parenthood is full of surprises. Some are delightful, some are exhausting, and some are completely unpredictable. Add hemophilia to the mix, and everything becomes a little more complicated. Over the years, I’ve learned that balancing relationships, parenting, and a chronic condition is not about perfection. It is about understanding…
After five years of follow-up, Hemgenix (etranacogene dezaparvovec-drlb) was associated with durable factor IX (FIX) levels, lower bleeding rates, and a substantial reduction in the need for regular FIX infusions, with a generally favorable long-term safety profile in men with severe or moderately severe hemophilia B. These data…
In 2025, Hemophilia News Today delivered readers timely reporting on research, therapeutic options, and clinical trials for hemophilia. Below is a list of the top five most-read stories we published this year. As we enter 2026, we look forward to continuing to support and serve as a source…