In an instant, things can change and redefine who we are. One minute life appears to take us down one road, and then we encounter something that brings us toward an entirely different destination. Whatever happens, we know that life will never be the same again, and our entire perspective…

BioMarin Pharmaceutical Inc. is partnering with digital content agency Believe Limited to produce a three-day musical workshop for young members of the bleeding disorders community. The “Breaking Through!” musical theater intensive, the first program of its kind, will be held Nov. 9-12 in New York City, and aims at teaching…

My condition, hemophilia, has always been an enigma for me. It’s been a huge challenge to my personal development, physical health, and mental stability. I wanted to believe that this disease was given to me for a reason. However, as the years progressed, I was wracked with hemophilia complications, and…

Hemophilia patients who develop inhibitors against treatment face markedly higher healthcare costs — about three times those of other patients — and experience poorer quality of life, according to a team of scientists in Italy. Alternatives are available and should be considered for these patients, they write. The study, titled…

The National Heart, Lung and Blood Institute (NHLBI) is hosting a State of the Science Workshop on May 15-16, 2018, in Bethesda, Maryland, to include input from the hemophilia community into a coordinated strategy for future basic, translational, and clinical research. Although preregistration is closed, on-site registration…

A newly identified class of stem cells in blood vessels, called vascular endothelial stem cells, were able to repair injured vessels and ease bleeding symptoms in a mouse model of hemophilia, researchers at Osaka University in Japan report, suggesting these cells may treat this bleeding disorder. The vascular endothelial stem cells, or VESCs,…

I held my son, my firstborn, in my arms. From outward appearances, no one could guess that he had a bleeding disorder. Some moments, I forgot about his diagnosis. Life seemed to be moving at a healthy pace, and my wife and I invited the newest member of the…

Hemophilia A patients who do not refrigerate their bleeding prevention therapy are more satisfied with it and report fewer restrictions on their daily activities, a study finds. Researchers also discovered that most of the patients were unaware that they could keep their recombinant factor VIII clotting therapy at room temperature.

When my sons were born and diagnosed with hemophilia, we lived in Houston and had access to the Gulf States Hemophilia and Thrombophilia Center. I had access to treatment and never considered that I’d be kept from it. When my youngest, Caeleb, was only 7 months old, my…

In honor of Bleeding Disorder Awareness Month, celebrated in March, CVS Health is donating more than $260,000 to national and local hemophilia and bleeding disorder programs across the United States. Although there’s no exact number of how many people are now living…