There’s something special about each day of the week. I enjoy Thursday because my weekend begins at the close of the day. I enjoy Wednesdays because it’s the middle of the week, and the weekend is closer (I think there’s a pattern here). Sundays are special because, as a…
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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…
Not long after I started working at the Hemophilia Federation of America (HFA), the organization hosted a congressional reception to help raise awareness about bleeding disorders. The bleeding disorders community must maintain its visibility among government decision-makers who help address important issues, such as ensuring our access to the…
The U.S. Food and Drug Administration (FDA) has approved an update to the label of Alprolix, based on long-term efficacy and safety data from two Phase 3 studies, the B-YOND extension trial and the Kids B-LONG pediatric study, manufacturer Bioverativ announced. This label extension, which adds pediatric data, further supports…
It’s normal to come across inconveniences in daily life. Imagine being in the following scenarios: You’re filling out an important document with a pen when it runs out of ink midsentence. It’s a typical morning and you’re on your regular train to work when it breaks down out of…
May is a busy month — with end of school year parties and graduations, the time flies as summer begins. This month is significant for another reason: May is Mental Health Month. It is wonderful that our society talks openly about mental health issues. When I was growing up,…
Today, I received a phone call from my dad. He wanted to talk to me about safekeeping some of his finances, as he had been planning to travel to our hometown to sort out some property-related matters. Since my mom passed away in June, he has been focused on getting…
Scientists have improved protein drugs using an approach based on “ancestral sequence reconstruction,” or ASR. The newly established strategy promises to enhance the ability to engineer more efficient and durable proteins, as in the case of human factor VIII for hemophilia. The study “Enhancing the pharmaceutical properties of protein drugs by…
Summer is upon us. Our kids have big plans: sleeping in, watching television, playing video games, sleepovers, vacations, and summer camp. From church camp to athletic and band camp, the summer is filled with opportunities. The bleeding disorder community also has summer camps across the country from June to…
A name is not mere letters on paper or a screen, but a way to proclaim our existence. What we call ourselves lets the world know who we are. My name, Joe Keith, comes from my great-uncle (my grandfather’s brother). I take a great deal of pride in carrying on…