More than 21 years ago, when my first child was born and diagnosed with severe hemophilia A, he was very fortunate to have first-generation clotting factors available. These were concentrates stabilized with albumin that were very safe. When the factor was reconstituted with sterile water, a seemingly…

https://www.youtube.com/watch?v=sK2EIwmIYPo This video from the Bleeding Disorders Community focuses on sports for children with hemophilia. It explains that physical activity is important for people living with hemophilia, as it helps build muscle strength and maintain physical fitness, but that not all sports are suitable for those living…

In this video from the Bleeding Disorders Community, hemophilia patients and their families talk about how the disease has affected their lives but more importantly, how they haven’t let the disease redefine who they are as people. MORE: Three tips for coping with a hemophilia…

The latest results of CSL Behring’s recombinant coagulation factor IX (FIX) Idelvion, also known by its generic name CSL654, demonstrated long-lasting therapeutic potential for both pediatric and adult patients with hemophilia B. The findings were detailed in poster presentations at the 26th Biennial…

Bayer has awarded a combined $2 million in hemophilia research and patient-care grants to 16 scientists and doctors from eight countries. Four of the winners are from the United States. Three represent the Children’s Hospital of Philadelphia and one the Uniformed Services University of the Health Sciences in…

When talking about hemophilia, women are often overlooked. This is because males are much more susceptible to hemophilia A and B, while most females only experience mild symptoms that allow them to lead a mostly normal life (although this is not the case with type C). Because of the mild symptoms,…

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…

Treatment with Eloctate and Alprolix improves joint health, bleeding episodes and quality of life of patients with hemophilia, Bioverativ and Sweden’s Sobi recently announced. The data is being presented at the International Society on Thrombosis and Haemostasis (ISTH) 2017 Congress,  through July 13 in Berlin, Germany. Hemophilia is a…

https://www.youtube.com/watch?v=qKRqJWVQRio This video from the Centers for Disease Control and Prevention takes a look at hemophilia and explains what the blood disorder means for those who suffer from it. MORE: Three tips for coping with a hemophilia diagnosis.  Hemophilia patients and caregivers share how hemophilia affects their everyday lives…

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…