I’m late getting my garden ready for the season. I considered giving in and leaving the weeds and remnants from last year’s harvest for another season, but seeing the butterflies and bees come to my space and picking fresh vegetables brings me too much happiness. So I enlisted my husband…

When my oldest son, Julian, was 5, our paths crossed in the medical world. My wife, Cazandra, was out of town, and my boy and I were holding down the fort at home. Julian had hemophilia with a low-titer inhibitor and thus needed to infuse factor VIII every day.

Sanofi has reduced the dosing of its investigational treatment fitusiran in clinical trials to lower the risk of blood clots in people with hemophilia, according to a joint statement representing patient organizations worldwide. In October 2020, the company placed a voluntary dosing hold on its full clinical…

Signs are appearing outside restrooms in the United Kingdom to advise members of the public that not all disabilities are visible. MORE: Learn more about hemophilia and what it really means to have the blood disorder. According to a report from the BBC, the signs are being posted to help those…

Special education. Those two words strike fear into the hearts of many parents. “But my son doesn’t need special ed!” I know, because I was one of those moms. When my oldest son Julian, now 22, was in elementary school, the idea of a 504 plan — based…

I do not have hemophilia. My sons are the ones who live with a chronic bleeding disorder, and at first, I struggled to find something we might have in common. My wife and I are musicians, and the running question during my wife’s pregnancies was, “What if they are…

uniQure has achieved its target patient enrollment goal ahead of schedule for its ongoing Phase 3 HOPE-B trial. The trial is assessing the safety and efficacy of AMT-061 (etranacogene dezaparvovec), the company’s investigational gene therapy for the treatment of patients with moderate and severe…

Hemophilia patients with a low number of red blood cells and reduced coagulation factor levels — the activity level of proteins essential for blood clotting — are at a higher risk of increased blood loss during a knee replacement surgery, a study reported. The study, “Risk…

When fellow columnist G Shellye Horowitz asked me to travel to Houston to support her through surgery for superior mesenteric artery syndrome, I didn’t hesitate. I knew I needed to be there. She told me I was the perfect choice because I understand hemophilia, its treatment,…