Me: “Hello?” Medical assistant: “Hi, Shellye, the doctor wants to see you ASAP to discuss your recent test results. She’s concerned.” Me: “Oh no, that doesn’t sound good. Can you tell me what’s going on?” Medical assistant: “We just got your baseline bone density tests back and they show you…

Sangamo Therapeutics will regain full rights to develop and market giroctocogene fitelparvovec, a gene therapy candidate for adults with moderately severe to severe hemophilia A, after Pfizer decided to end its involvement in the program. Pfizer’s decision not to advance into regulatory submissions came despite positive…

The U.S. Food and Drug Administration (FDA) has approved Novo Nordisk’s concizumab, which will be sold under the brand name Alhemo, as a daily treatment to prevent or reduce the frequency of bleeding episodes in certain adults and adolescents with hemophilia. Eligible patients are those with hemophilia…

In 2024, Hemophilia News Today provided readers with up-to-date coverage on research, treatments, and clinical trials for hemophilia. We compiled the top 10 most-read stories of the year, each with a brief summary. As we enter 2025, we look forward to continuing to support the hemophilia community. We…

Two and a half years ago, I purchased a manufactured home in need of a few repairs. Truthfully, it had really good bones, but was a dump. But I saw the potential in it and knew that with enough love, time, and renovation it would be a beautiful place to…

December not only marks the end of the year, but it’s also the time for my annual visit to the specialists at my regional hemophilia treatment center (HTC). I live more than two hours away from them, so I appreciate the convenience of telehealth appointments, which are far more…

For adults and adolescents with hemophilia A without inhibitors, Altuviiio (efanesoctocog alfa) may work better than other standard or extended half-life factor replacement therapies at preventing bleeding episodes, while requiring less frequent injections, a study found. Researchers made an indirect comparison of data from XTEND-1 (NCT04161495) and published…

When someone we love is diagnosed with a chronic illness, our instincts often compel us to search for solutions: stricter routines, healthier diets, more discipline, or the willpower to push through. While self-help culture tends to praise these strategies, our family’s experience with chronic illness has shown that they can…

Nearly two-thirds of hemophilia A patients given a single infusion of the investigational gene therapy giroctocogene fitelparvovec were free of bleeding episodes a median of almost three years after being treated, according to full data from the Phase 3 AFFINE clinical trial. These new data add to top-line…

Last April, I had the privilege of attending the Coalition for Hemophilia B’s annual symposium in Dallas for the first time. It was a transformative experience filled with educational sessions, meaningful social connections, and a shared passion for advancing care within the hemophilia B community. The event brought together…