Wayne Cook is someone you can’t help but love from the moment you meet him. His warmth, passion, and dedication to the hemophilia community have made him an irreplaceable figure. He stars in “On the Shoulders of Giants,” a film by a patient engagement agency called Believe Limited that…
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2seventy Bio has expanded its collaboration with Novo Nordisk to develop a gene-editing approach to treat hemophilia A. Under this agreement, Novo Nordisk has the option to exclusively license 2seventy Bio’s proprietary mRNA-based megaTAL technology — customizable enzymes designed to recognize and cut specific DNA regions.
Last week, I read Gill Paul’s latest novel, “The Lost Daughter.” The book is a historical fiction account of Russia’s Romanov family. It is well-known that the Romanovs and hemophilia are connected, but I had no expectation that bleeding would play into the plot. Near the beginning of…
Novo Nordisk’s recombinant coagulation factor IX nonacog beta pegol (N9-GP), under the U.S. trade name Rebinyn, has been approved by the U.S. Food and Drug Administration (FDA) to treat adults and children with hemophilia B. The company expects to launch this new treatment in the United States early in 2018. The…
Labor and delivery in women with hemophilia Planning for childbirth depends on the needs of the mother and the child affected by hemophilia. Levels of clotting factors should be measured in the last trimester of pregnancy, since it is difficult to measure during labor. If levels are low, treatment may…
This past week has been a whirlwind of activity for our family. My husband, Jared, who has severe hemophilia B, experienced a knee bleed that required careful management. But that didn’t stop him from fulfilling his responsibilities around the house and making progress with his budding bottled food business.
When you look at me, you’ll see a quirky, colorful, loud, and active person, yet at the same time, I am reserved. I am of average height and weight, and am known as a hiker, a cyclist, and (for very short stints) a beach jogger. I smile a…
Some days it’s easy to see the cracks in our family’s situation — the unpredictable costs, the logistics of keeping medication on hand, the mental load of being a partner to someone with severe hemophilia B and epilepsy. But every so often, I remind myself that there are…
Although moderate to severe hemophilia patients are generally protected against the development of cardiovascular disease, cardiovascular-related events can still occur in this patient population, a study reports. These findings suggest that efforts should be made to prevent cardiovascular disease in hemophilia patients who have risk factors associated with the…