When my oldest son was diagnosed with severe hemophilia at birth, I found myself catapulted into a world I never knew existed. I became part of the bleeding disorder community, like it or not. I slowly began to realize that this community was filled with passionate, well-educated people who knew…

Organizations championing patients with hemophilia and other bleeding disorders have formed a united front to oppose the Better Care Reconciliation Act, the Obamacare replacement legislation that the groups contend will damage the hemophilia community. The National Hemophilia Foundation, Hemophilia Federation of America, Coalition for Hemophilia B and…

European regulators have granted orphan drug status to CB 2679d, a hemophilia B therapy that Catalyst Biosciences developed to prevent bleeding episodes. The therapy, known as ISU304 in South Korea, prevents bleeding by increasing hemophilia B patients’ level of a blood protein called Factor IX, which is deficient in the disease.

This children’s video from Centers for Disease Control and Prevention focuses on how to tell your friends that you have hemophilia. MORE: How kids can play safe with hemophilia.  Billy, a young boy with hemophilia, answers some of the questions that his friends ask about the disease. He…

For many years, those who suffered from hemophilia were told to not take part in any kind of physical exercise. It was only in the last 40 years or so that doctors started encouraging patients to choose a physical activity that’s both safe and enjoyable for each individual. Play safe…

Hemophilia is a genetic disorder that prevents blood clotting. Most common in men, there are two main types of hemophilia: hemophilia A and B. Below is a curated list of recommended reads for family members, friends and carers of patients with hemophilia, with help from Good Reads and Alibris.

Results from two Phase 3 trials support the use of emicizumab for the preventive treatment of hemophilia A in children, adolescents, and adults, Genentech announced. These results will be presented at the 26th International Society on Thrombosis and Haemostasis (ISTH) Meeting July 8-13 in Berlin, Germany. Emicizumab is an…

In this video shared by Colleen, learn about a mobile app from Pfizer which helps hemophilia patients track bleeds, infusions and factor supply. It also allows those living with the disease to track their daily physical activities, steps and heart rate to help…

Hemophilia is a rare blood disease which usually occurs in males. In fact, it’s extremely rare for women to be born with the condition because of the way it’s passed down genetically. A female would need to inherit two copies of the faulty gene — one from each parent —…

Shire is developing a potential new strategy to improve the effectiveness of genetic delivery of clotting factor VIII (FVIII) for the treatment of patients with hemophilia A, and clotting factor IX (FIX) for patients with hemophilia B. The most recent findings on these new therapeutic strategies and the latest…