The National Hemophilia Foundation (NHF) has opened a grant program to support the local groups and chapters that work with bleeding disorder families, and have watched as their revenue sources dry up during the COVID-19 pandemic. Called the COVID-19 Fund Bridge Grant program, the effort is open to…

Refixia or Rebinyn (nonacog beta pegol, or N9-GP), an approved replacement therapy for hemophilia B, is effective and has a good safety profile in previously untreated boys younger than 6 with severe to moderately severe disease, an early analysis of a Phase 3 trial indicates.  In…

I am a home-based entrepreneur. My husband and I run a small online jewelry boutique, selling items straight from our bedroom. Two years ago, I decided to quit my full-time office job to focus on growing our concept of a PWD-run fine jewelry brand. I had my doubts, but…

Novo Nordisk has resumed its Phase 3 clinical trials investigating concizumab as a potential treatment for hemophilia A and B, the company announced in a press release. The trials were paused in March due to the occurrence of non-fatal thrombotic (blood-clotting) events in three patients. In collaboration…

Have you ever been to a holiday dinner with two tables? One table is designated for “the adults” and the other is for “the kids.” Growing up, this was the case at many family gatherings. I felt offended when I, as a teenager in high school, was stuck…

Treatment with Idelvion (rIX-FP) helps children and adults with hemophilia B stick to prophylactic dosing schedules by reducing treatment burden, according to a study using clinical trial and real-world data. The study, “High adherence to prophylaxis regimens in haemophilia B patients receiving rIX‐FP: Evidence from clinical…

Long-term prophylaxis, or preventive treatment with Adynovate continues to safely reduce bleeding events over multiple years in children and adults with severe hemophilia A without causing neutralizing antibodies, a Phase 3b trial found. The study, “Long‐term safety and efficacy results from the phase…

Saturday afternoon marked the opening of the virtual edition of the National Hemophilia Foundation’s Bleeding Disorders Conference. I immediately missed the in-person experience, meeting old friends, walking through the exhibits, and other benefits that come with traveling to another city. But I like the opportunity to hear great thinkers in…

Starting factor VIII (FVIII) preventive therapy before the age of 2.5 years improves joint outcomes in young adults with hemophilia A compared to starting treatment later in childhood, a clinical trial shows. The study, “ Young adult outcomes of childhood prophylaxis for severe hemophilia A:…

The U.S. Food and Drug Administration (FDA) has cleared for use CRYOcheck Chromogenic Factor VIII, Precision BioLogic‘s lab test to monitor factor VIII activity in the blood of hemophilia A patients ages 2 and older and help in disease management, the company said in a…