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…

A publicly available, patient-reported outcome measure is being jointly developed by Green Park Collaborative (GPC) and the National Hemophilia Foundation (NHF) to evaluate the effect of gene therapy on the mental health outlook of people with hemophilia type A and type B. The collaboration follows work…

When you are around someone day in and day out, there are things that you don’t notice. A few pounds lost, a change in mood, or even a change in their daily habits. My 14-year-old son Caeleb has endured quite a bit of trauma over the years as a result…

Editor’s note: Please be advised that the topic of suicide is addressed in this column. Resources for help are listed at the end of the column. It happens to the best of us. The alarm goes off in the morning and we do NOT want to get out…

The likelihood that teenagers and young adults with hemophilia will use a prophylactic replacement therapy as prescribed is mostly influenced by their level of responsibility in taking their infusions, and their own estimates of risk for each activity, a study suggests. To improve treatment adherence, doctors should discuss its importance during…

We have looked forward to this moment for years. No longer do we have to find veins or stick a 2-inch needle into a port-a-cath under the skin every day. All that is required is a subcutaneous injection every two weeks. The future is here, and while we exude…

Parenting is not easy. And when you have a child with a rare bleeding disorder such as hemophilia, it is exponentially more difficult. Not only are you dealing with the typical ear infection, cough, or broken wrist, you also must consider how hemophilia plays into the mix. My youngest son,…

We grow up hearing our mentors — women we respect and love — regularly complain about menses. Periods seem to be a fairly universal inconvenience and bother. However, I believe there is a fine line between inconvenience and suffering. Your period should not make you miserable. Movements to…