When young Max Levy had to have a port put in his chest for hemophilia medication, his family nicknamed him Iron Man after one of his favorite Marvel action heroes. The story touched a lot of hearts and was even shared by Robert Downey Jr. on his…

One of the major hurdles people with hemophilia face is complying with their medication schedule — in particular, injecting themselves several times a week with clotting factor. MORE: Seven recommended books to learn more about hemophilia Clotting factor has a relatively short half-life (the time it takes for a person’s…

An ongoing Phase 1/2 clinical trial evaluating a gene therapy, SPK-9001, in people with hemophilia B is expanding its enrollment by up to five more patients, who will be given a new version of the therapy, its developer announced. One patient in this group has already received SPK-9001 produced under…

Swedish Orphan Biovitrum (Sobi) announced the successful enrollment of the first hemophilia A patient in the company’s ReITIrate clinical trial. The Phase 4 study (NCT03103542), sponsored in collaboration with Bioverativ Therapeutics, is actively recruiting participants who have developed inhibitors and who have failed to respond to other therapies. Researchers will…

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…

Interim results from the Phase 3 ASPIRE study indicate that patients with hemophilia A showed continuous improvement in joint health for nearly three years while receiving prophylactic dosing of Bioverativ and Sobi’s Eloctate. The interim results were reported in a study titled, “Improved joint health in subjects with severe haemophilia A…

A new online service allows patients with bleeding disorders like hemophilia to share important information about their treatment and bleeds with their medical team in real time. MORE: Five tips for living healthily with hemophilia The HemaGo XChange portal was created by Novo Nordisk A/S as an update to their existing website…

The U.S. Food and Drug Administration (FDA) has accepted Bayer’s Biologics License Application (BLA) filing for BAY94-9027 to treat hemophilia A in adolescents starting at age 12, and in adults. A BLA is a marketing application that covers biological products, as opposed to chemically synthesized ones, and its…

This video, shared by Colleen, is all about a mobile app from Pfizer that 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…

Eating well is important for everyone, but particularly for those living with hemophilia. Eating a diet that encourages strong bones and muscles and helps keep you at a healthy body weight is essential. MORE: Young boys explain what it’s like to live with hemophilia Obesity is becoming a major problem when it…