For many years, my wife, Cazandra, played in the orchestra at Houston’s First Baptist Church in Texas. Her musical ability was second to none. I loved hearing the passages she played as she soared up to beautiful high notes with phrasing that made my heart melt. We had a…

It’s not easy to live with hemophilia in the Philippines. When we hear stories of hemophilia care around the world, it’s hard not to feel envious of hemophiliacs outside of our country who receive proper healthcare and can live a normal life. In this column, I will tackle the issue…

Unexpectedly high demand for the 3,000 international units (IU) vial size of Rebinyn (nonacog beta pegol) has resulted in a temporary shortage of the Novo Nordisk factor IX (FIX) replacement therapy for those with hemophilia B, according to the company. In a statement, Novo Nordisk said…

Almost three years of treatment with SerpinPC was associated with a nearly complete resolution of bleeds and a reduction in the number of affected joints among men with severe hemophilia A or B who participated in a Phase 1/2a clinical trial. The…

The European Medicines Agency (EMA) is considering lowering the minimum number of patients required in clinical trials of potential hemophilia treatments because of “dramatic” increases in hemophilia research and concerns about the availability of patients for rare diseases like hemophilia A. “EMA began the process after becoming concerned that the minimum…

In recognition of World Hemophilia Day 2018, the biopharmaceutical company Bioverativ is sharing the stories of people with hemophilia in the developing world to highlight the life-changing potential of adequate treatment. In honor of this year’s theme, “Sharing Knowledge Makes Us Stronger,” Bioverativ will collaborate with members of the hemophilia community…

I have to admit, I was captivated by Hemophilia News Today‘s Facebook page during the final days of December, eagerly following its countdown of the year’s top 10 most-read columns. It was an incredible honor to see that my columns secured eight of those 10 spots. Each one…

The U.S. Food and Drug Administration (FDA) has cleared clinical testing in adults of BE-101, a B-cell treatment candidate for hemophilia B being developed by Be Biopharma. The Phase 1/2 trial, called BeCoMe-9, will be a first-in-human study designed to assess the safety and preliminary efficacy of BE-101…

I am in a video game. My mission: Fight the medical bureaucracy and access care. I must complete three levels and capture the golden key, which unlocks a fortress where healthcare is obtained. I’m stuck on Level 2. No matter what I try, I can’t gather the tools to unlock…

For most of my 56 years, I’ve felt isolated from the hemophilia community. Before the internet — yes, youngsters, there was such a time — I had very little education about my bleeding disorders and no idea what to expect. I felt no sense of community. Hemophilia didn’t run in…