In my five-plus years of writing columns for Hemophilia News Today, I’ve missed two weeks. Many times, I feel that I’m repeating myself as I struggle to write something that matters to the bleeding disorders community. I share daily experiences as I navigate bad and good moments with…

Eptacog beta was safe and almost 100% effective at stopping bleeds within 24 hours in boys ages 12 and younger with hemophilia A or B, according to final data from the Phase 3 PERSEPT 2 trial. According to researchers, this bypass agent may be an important option for…

Trio Health has launched a novel database with real-time clinical data of patients with hemophilia which combines information from medical doctors and pharmacies. The main aim of the database is to provide information on the treatment regimen to physicians in order to improve patients’ outcomes. Access to the database…

Medexus Pharmaceuticals has completed patient enrollment in its clinical trial investigating Ixinity as a preventive treatment for children younger than 12 with hemophilia B.  The open-label Phase 4 trial (NCT03855280) achieved its target enrollment goal of 22 participants and is being conducted in 15 centers in Brazil,…

The U.S. Food and Drug Administration (FDA) has restored its approval of BeneFIX as a routine prophylactic, or preventive, treatment for bleeds in children and adolescents under 16 with hemophilia B. Marketed by Pfizer, BeneFIX is a lab-made version of factor IX (FIX), the blood clotting protein that…

December not only marks the end of the year, but it’s also the time for my annual visit to the specialists at my regional hemophilia treatment center (HTC). I live more than two hours away from them, so I appreciate the convenience of telehealth appointments, which are far more…

My husband, Joe, and my sons, Julian and Caeleb, each have their own unofficial jobs when we decorate for the holidays. Julian brings the dusty red and green totes full of Christmas decorations in from the shed. I open them and decide what comes inside first. Joe and Caeleb…

Wayne Cook is someone you can’t help but love from the moment you meet him. His warmth, passion, and dedication to the hemophilia community have made him an irreplaceable figure. He stars in “On the Shoulders of Giants,” a film by a patient engagement agency called Believe Limited that…

Aptevo Therapeutics announced the dosing of a first patient in a Phase 4 study aiming to extend use of its prophylactic (preventive) treatment Ixinity (coagulation factor IX [recombinant]) to children with hemophilia B  younger than 12 years old. “Initiation of the clinical study of Ixinity in…

My heart raced and pounded as a bead of sweat rolled down my cheek. My chest was so tight that it hugged my heart, which seemed to be doing flips. What was happening to me? I wanted to run away. I wanted to stay and hide. I wanted to scream…