My sons, Julian and Caeleb, were both diagnosed with hemophilia as babies. Although they’re 10 years apart, each diagnosis was overwhelming and affected my wife, Cazandra, and me differently. I remember feeling helpless, not knowing anyone who had the slightest idea how to manage a bleeding disorder. For the…

I grew up in a mostly white suburb of Houston. My dad, who was of Mexican descent and had dark skin, spoke English as his second language. He worked hard, went to school, and earned both his bachelor’s and master’s degrees in education from the University of Texas. He became…

A new type of gene-editing treatment being developed by researchers in Japan corrected mutations causing severe hemophilia B in mice, restoring production of the missing clotting factor IX (FIX), which causes the rare bleeding disorder. The scientists say their novel nonviral treatment — which does not use an inactivated…

I don’t usually ask myself whether I want something. I ask whether I can justify wanting it. Is it practical? Financially responsible? Useful enough? Meaningful enough? Will I regret spending the money? Could I explain the decision to someone else without sounding irresponsible? I suspect many care partners know this…