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…

For many years, my wife, Cazandra, played in the orchestra at Houston’s First Baptist Church in Texas. Her musical ability was second to none. I loved hearing the passages she played as she soared up to beautiful high notes with phrasing that made my heart melt. We had a…

The first-in-human Phase 1/2 clinical trial testing BE-101, Be Biopharma’s B-cell treatment candidate for hemophilia B, is now enrolling patients at two sites in the U.S. BE-101, a first-in-class therapy, aims to address the persistent unmet needs of hemophilia B patients — particularly the burden of ongoing treatment…

Dear Santa, This year, I’ve decided to pen a special letter to you — not for myself, but for the global hemophilia community. As the holiday season fills the air with hope and goodwill, I can’t help but reflect on the challenges and dreams of those of us living…

Bone mineral density, or the amount of mineral in bone tissue, is decreased in 63.1% of people with hemophilia, according to a study from Germany. Study findings also indicated the degree of loss depended on hemophilia severity. Patients with severe hemophilia had lower bone mineral density in the left…