As part of a Coalition for Hemophilia B contest, people with hemophilia B, their siblings, and caregivers are invited to design a comic or coloring book that tells a story about how they manage this rare blood disease. There will be a $500 award for winners in each of…
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According to hemophilia A patients, FuseNGo, Pfizer‘s pre-filled syringe device used for both the treatment and prevention of bleeding, is easy to use and has a wide range of benefits, a study reports. These results support the potential for FuseNGO to increase patient adherence to therapy. The study,…
An excellent sitcom in the late 1970s and early ’80s featured the character Herb Tarlek, played by Frank Bonner. Fans of “WKRP in Cincinnati” will remember how Tarlek, a sales manager, would do anything necessary to secure advertising for his radio station, such as soliciting ads from outrageous…
Mim8 (denecimig) is an antibody therapy being developed to prevent or reduce the frequency of bleeding episodes in people with hemophilia A, with or without neutralizing antibodies (inhibitors).
When you live with a bleeding disorder, you quickly learn that the words people use matter almost as much as the treatments themselves. I’ve been called a “carrier” and a “hemophiliac,” and told that my condition was “mild” or “moderate,” as if these words fully described the challenges…
BioMarin Pharmaceutical’s investigative gene therapy, called valoctocogene roxaparvovec, is capable of sustained control of bleeding rate requiring factor VIII infusions by at least 92% in adults with severe hemophilia A, three-year data from a Phase 1/2 trial show. Moreover, a model predicts that the…
When I was diagnosed with bleeding disorders in the 1970s, the world of hemophilia looked very different. Treatments were scarce, hospital visits were frequent, and the idea of living a “normal” life seemed like a distant dream. Today, I meet children and young adults with hemophilia who’ve never known…
Nothing makes me happier than when my oldest son, Julian, is home and my family is all under the same roof. We cook, laugh, and watch movies. My happy place is with my husband and two sons. One night over dinner, our conversation moved toward the high school band…
We received some unexpected news this week from the University of New Mexico, where our youngest son, Caeleb, is a rising sophomore. Although we had thought he’d be able to move into a dormitory on campus this fall, it appears he’s still on a waiting list, and the chances…