A lack of control is one of the most frustrating things about staying in the hospital. Doctors, nurses, and everyone else enters the room without permission. Nothing runs on my schedule. I need to find a way to reclaim at least a small part of my life. I do not…

It was a beautiful Sunday afternoon and I encouraged my son Caeleb to take our dog, Betty, for a walk. He gathered the necessities of a 14-year-old — headphones and music — and put Betty on her leash and off they went. Encouraging my son to be active is difficult.

Carrier moms — those whose sons or daughters have hemophilia — inspire me. I see you struggle, sometimes daily, with the realities of parenting a child who has a chronic condition. Your tireless dedication necessary to ensure a child’s safety and proper medical treatment can be challenging and…

Memories flooded my mind as I was going about my usual work today. I suddenly thought about my life before I met my husband, Jared, before my pregnancy, and before our daughter, Cittie, was born. I thought about my depression. And then I thought about our future as…

Catalyst Biosciences has announced new clinical data supporting the safety and efficacy of its lead candidate therapies for treating hemophilia. Factor IX (FIX) dalcinonacog alfa (DalcA) was found to safely prevent bleedings in adults with hemophilia B, while factor VIIa (FVIIa) marzeptacog alfa (activated) (MarzAA) was…

Joint changes detected by magnetic resonance imaging (MRI), and often are missed on radiographs, are a strong predictor of damaging bleeds over the next five years in joints of people with hemophilia, a study suggests. A 10-fold increase in the five-year risk of joint bleeds was found by…

As a father of sons with hemophilia, I know my way around a hospital like the back of my hand. We have visited the emergency room far too often. An internal bleed from a fall or a spontaneous joint injury would start at home and continue to cause…

The gleaming new Dutch headquarters of the European Medicines Agency (EMA), fronting Domenico Scarlattilaan in Amsterdam’s suburban Zuidas business district, finally opened for business last month — just over two years after the European Union decided to relocate the EMA to the Netherlands in the wake of Brexit.

I’ve been living with chronic pain for several years. When I’m asked whether I had an accident or trauma to my neck and back, my answer is no. But I think hemophilia indirectly triggered my pain. Years ago, when my youngest son, Caeleb, was in a wheelchair, I think…

Two members of our local hemophilia community passed away in recent weeks. My husband, Jared, knew one of them, who succumbed to an iliopsoas bleed. The other was an older member of the hemophilia organization my husband works with. He had a stroke that led to bleeding in…