The gene therapy BBM-H901 increased factor IX activity in 10 men with moderate to severe hemophilia B, while reducing bleeds and the use of FIX replacement therapy over one year, according to results of a pilot Phase 1 trial. “The study was the first clinical trial conducted by Belief BioMed…

Many times when my sons were younger, I found myself overwhelmed by the constant demands of their bleeding disorder and felt that I had nothing else to give. The needle on my gas gauge was below empty. I felt as if I’d used every ounce of energy and couldn’t…

Spring is in the air. With flowers blooming and birds chirping, this time of year is filled with new life and new beginnings. It’s also graduation season, a time that brings hope. Families share loved ones’ accomplishments and celebrate the end of one season and the beginning of the next.

The U.S. Food and Drug Administration (FDA) has accepted — under priority review — a marketing application for EtranaDez (etranacogene dezaparvovec), an investigational gene therapy for adults with hemophilia B. The FDA grants priority review to investigational therapies designed to treat serious medical conditions. If approved, the treatment…

When I was younger, my family moved around a lot. I also spent a lot of time traveling all over the Philippines with my mom, due to her government job. I especially loved going to the beach, whether to swim or just listen to the soothing sound of the waves…

One of the unexpected issues I struggled with when my youngest son, Caeleb, faced many prolonged hospital stays due to internal bleeding episodes was loneliness. My wife, Cazandra, and I divided our time between the hospital and home life with our older son, Julian. As a result, we…

My husband, Jared, and I have maintained a small garden on our balcony ever since we moved into our new home. We started out with just a few potted herbs, and as time went by, we expanded our collection to include some ornamental plants and flowers. Jared is a wizard…

It’s easy to spot physical damage, such as swollen joints, nosebleeds, limps, and bruises, when one suffers from a bleeding disorder. But the psychological and emotional damage that may result is not as easy to see or treat. A U.S. survey of hemophilia patients, published a few years…

I love the final-night event of a national bleeding disorder conference. Different groups invite community members to play games, the meal is remarkable, and the dance floor begs for us all to gather and celebrate. After the highly informative events offered by leaders in the bleeding disorder community, friends…

Affirmation: one word with significant connotations. From the day we come into this world, we seek an acknowledgment that our presence on this planet matters. To be affirmed by those around us reinforces the idea that our contributions to our community hold special significance. When we hear others give…