When my husband, Jared, has a hemophilia bleed, we know what to do. We immediately implement the RICE method of Rest, Ice, Compression, and Elevation. We also add to that list factor infusions and the monitoring of Jared’s condition. Hemophilia is complex, but there’s a strategy for managing it.

Last week in Tampa, Florida, I attended the CHES Foundation’s One Drop consortium, the largest national conference dedicated exclusively to people living with ultra-rare bleeding disorders. The program focuses on conditions that often lack the resources, research attention, and community networks that are available to those with more common…

Children with hemophilia in areas with limited medical resources face a high risk of fatal brain bleeds, a danger that is dramatically worsened by delays in seeking emergency care. A new study from Thailand reveals that without access to modern preventive therapies, more than a third of pediatric patients…

I like to think my wife, Cazandra, and I did a decent job of teaching our two sons, Julian and Caeleb, how to manage their bleeding disorders. We drilled into their heads the importance of maintaining health insurance, as their hemophilia medications are too expensive to afford…