When you’re a parent to a child newly diagnosed with a bleeding disorder, the immediate concern is for your child. What do I do next? Will they be OK? What will life look like from now on? You find yourself searching for answers and developing a support system…

An investigational factor VIIa (FVIIa) therapy called GEN-0828 may be able to minimize blood loss and accelerate blood clotting at lower doses than NovoSeven, an approved medication used to control bleeding in hemophilia patients, according to a study in a mouse model of hemophilia B. Still, both treatments…

Recently, I discussed an issue with several men with whom I meet on Monday mornings. We talk about various topics, and that morning’s conversation centered around the idea of forgiveness. For a healthier life, we must let go of resentments and embrace change. Only through surrendering our pain can…

I read this week about Bleeding.org LIVE!, a national livestream taking place at 4 p.m. Pacific time on March 28, and I felt something I don’t always feel when it comes to healthcare: seen. The three-hour livestream will be hosted by Greg Grunberg, an actor and bleeding disorders…

When my oldest son was diagnosed with hemophilia, it did not take long for my husband and I to start researching. More than anything I wanted connection. We found our local bleeding disorder chapter in Houston and began the journey with these amazing people. I was excited to…

While the holiday season brings excitement, it also creates unique challenges for families like ours who are managing chronic conditions. My husband, Jared, has severe hemophilia B and epilepsy, and I have attention-deficit/hyperactivity disorder (ADHD). While common advice suggests taking it slow, setting strict boundaries, and skipping some…

Emergency preparedness is a broad and crucial topic, especially for those of us in the bleeding disorders community. With natural disasters becoming more frequent and severe across the U.S. — think of the Los Angeles wildfires — planning ahead is more important than ever. As a Florida resident, I’ve experienced…

Health Canada has expanded its approval of Rebinyn (nonacog beta pegol) as a routine preventive treatment for bleeding episodes in hemophilia B to patients under age 18. The therapy, developed and marketed by Novo Nordisk, is now available to all hemophilia B patients as a preventive (prophylactic)…

Tomorrow is a long-awaited milestone in my pregnancy. I am scheduled to have an ultrasound, during which we will finally learn our child’s definite sex. My OB-GYN will also check for structural anomalies. I feel excited and nervous. All my husband and I want is a healthy child. But with…

One of the most frequent questions I hear is, “How do I find community?” The question resonates deeply with me because, like many others in the bleeding disorders community, I’ve struggled with feeling isolated and misunderstood. Finding a sense of belonging has been a journey, one filled with trial…