Bleeding rates and the use of replacement therapies among men with severe or moderately severe hemophilia B remain low at least three years after a single dose of the approved gene therapy Hemgenix (etranacogene dezaparvovec). That’s according to updated data from the Phase 3 HOPE-B clinical trial…

My husband, Jared, and I attended our first international concert together this month when we saw the American rock band Fall Out Boy at the Araneta Coliseum in Quezon City, Philippines. This concert was a milestone for both of us and truly one for the books. I’ve dreamed…

I eagerly anticipate a future where inherited bleeding disorders can be conclusively diagnosed, with absolute certainty, through genetic tests. Currently, conditions such as von Willebrand disease (VWD) pose diagnostic challenges, frequently requiring multiple tests over extended periods for confirmation. Although my initial diagnosis came after a single test,…

In the Philippines, where we live, Christmas isn’t confined to a single day. It unfolds as a season that spans about a third of the year, kicking off in the first of the “-ber” months. As a child, I cherished the joy of strolling through streets adorned with flickering…

‘Tis that season again — not the one adorned with festive decorations and holiday cheer, but the one with the formidable task of selecting a health insurance plan from the marketplace at healthcare.gov. For those contending with hemophilia or other chronic health conditions, this annual ritual can be…

Last month, I had the privilege and the honor of being one of 60 attendees at the Mild Matters Summit in Tulsa, Oklahoma, organized by the Hemophilia Federation of America (HFA). The summit aimed to empower those with mild bleeding disorders by providing essential information and tools to…

The holiday season is upon us. Often, we have our meal around a table with people we love, and we give thanks for one another’s company. The holidays are all about rituals — preparing feasts, gathering to exchange gifts, and focusing on the things that unite us. Year after…

A phone call in the wee hours of the morning makes the heart skip a beat, as it often brings bad news. A baby crying in the middle of the night means a sleep-deprived parent going through the motions of changing diapers and warming bottles. When the quiet hours of…

Adding an antibody targeting the anticoagulant protein S to factor IX (FIX) replacement therapy accelerated blood clotting in samples from children with hemophilia B, including those with severe disease, a study showed. Greater production of the blood clotting protein thrombin also was seen in these samples, while blocking…

Whenever I scroll through my Instagram feed, I often reflect on the “what ifs” in my life. For example, what if my life had unfolded exactly as I had envisioned it during my youth? As a child, I was a dreamer with countless aspirations. I envisioned living in a different…