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.

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 —…

Spark Therapeutics will present novel results regarding the ongoing Phase 1/2 clinical trial (NCT02484092) investigating SPK-9001 in hemophilia B patients at the International Society on Thrombosis and Haemostasis (ISTH) 2017 Congress, to be held July 8-13 in Berlin. Two presentations focus on data from the trial: “SPK-9001:…

A new study suggests that whole body vibration training increases muscle strength, bone mineral density, and functional capacity in children with hemophilia. The study, “Effect of whole body vibration training on quadriceps strength, bone mineral density, and functional capacity in children with hemophilia: a randomized clinical trial,” was published…

Hemophilia is a blood disorder that’s usually genetically inherited from parents. People born with hemophilia have little or no clotting factor – a protein needed for normal blood clotting. Hemophilia can also be acquired, meaning patients don’t inherit the disease from their parents but instead develop it during their lifetime. This…