Self-reported health outcomes of hemophilia patients provide useful and clinically valuable data on the efficacy of treatments, a population-based study shows. The study, “Real-world utilities and health-related quality-of-life data in hemophilia patients in France and the United Kingdom,” was published in…

For the second year, key pharmaceutical and academic leaders in hemophilia therapy development will gather at the Hemophilia Drug Development Summit — to be held in Boston Aug. 20–22 —to discuss and advance the next generation of safe and more effective therapies for bleeding disorders. The recent approval of  Genentech’s …

Most people will tell you that their children are opposites. One is outgoing, the other would rather be left alone. One will talk until your head hurts, the other will utter only a few words when prompted. Their personalities are different, yet they have the same biological parents. I see…

It’s been nearly five months since I became a mom to baby Cittie. In those months, my life has been transformed into something completely different. My social media feed, which used to be full of items about academics and career, is now full of articles about babies and…

The other day, I picked up “MacDonald the Younger” from hemophilia camp. I enjoyed the trip through the mountains. The air felt fresh as I grew anxious to see my son. I wanted to hear all about his camp experience. What friends did he see? Did he try the…

The vast majority of people in the hemophilia community support the implementation of newborn screening for the bleeding disorder in the United Kingdom, a study reports. The study, “Newborn screening for haemophilia: The views of families and adults living with haemophilia in the UK,” was published in…

More than half of people with hemophilia in Japan fail to take part in sports or other physical activities at levels thought necessary to maintaining good health,  a study reports. New strategies for education, support, and guidance are needed to promote better physical activity among this population, it recommended The…

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…

A new five-year alliance between Bayer and the World Federation of Hemophilia (WFH) Humanitarian Aid Program will deliver training, education and treatments to healthcare professionals in more than 60 underserved countries. ”Three out of four people with bleeding disorders living in developing countries do not have access to…

Inspired to sponsor a national conference for women with hemophilia types A and B, The Hemophilia Foundation of Michigan (HFM) became a game changer last November when it hosted an event called “Being Visible.” Gathering 103 women representing 32 states, the event featured physicians…