First meetings are always awkward, aren’t they? Well, I have the perfect icebreaker: Did you know that my husband, Jared, has hemophilia? Most people I meet are taken aback by this. Those with a thirst for knowledge are often intrigued. How often does one meet a person with hemophilia,…

https://www.youtube.com/watch?v=IhVOXnB-0KQ In this video from Bleeding Disorders Community, Ryan shares his hemophilia story. He was diagnosed as a baby with severe hemophilia but he doesn’t let the disease stand in the way of his passion for fitness. MORE: Improvement in gene therapy carriers key step in hemophilia…

Researchers have developed a faster, less expensive, reliable method for non-invasive prenatal diagnosis (NIPD) of hemophilia A. Future, larger studies are required to confirm the utility of the method, which could be used for the NIPD of hemophilia A and type B, as well as other X-linked…

The National Institutes of Health (NIH) is supporting a university’s research into the risk factors and underlying mechanisms involved in the development of neutralizing antibodies, or inhibitors, against replacement therapies in people with hemophilia A. The $6.6 million, three-year grant from the NIH’s National Heart, Lung, and Blood Institute…

With the holiday season in full swing, it’s the perfect opportunity to take a look back at 2017. It’s been a year full of ups and downs, and while there were definitely quite a few low moments, there were certainly quite a few highs. To celebrate the year that was,…

Well over 70% of children with severe hemophilia born in a region of Italy in the last 20 years were to women without a family history of the disease, data from a registry analysis show. “Our data highlight the importance of genetic counselling, especially in families with apparently sporadic haemophilia cases,…

Our baby girl turned one earlier this year. Watching Cittie mature makes me reflect on the innocent phase of childhood. Life was so simple back then. I believed games and toys to be major issues of the utmost importance. I stayed late after school and played with my friends.

Christmas season has always been stressful for me. I live in Florida, but my family lives in the arctic tundra of Illinois and Wisconsin. I can’t understand why my mom and I travel north instead of having  everyone come to us in sunny Florida, but as I often say, “It…

Preventive treatment with Hemlibra (emicizumab) is associated with better bleeding control and lower medication costs compared with immune tolerance induction, or ITI, among children with severe hemophilia A with inhibitors, a new study in China found. The researchers noted that use of the injection therapy Hemlibra also led…