Data from the first two patients treated with FLT180a, Freeline’s single-infusion gene therapy for patients with hemophilia B, showed a rise in levels of clotting factor IX to 40%, with levels remaining stable for over a year. Pratima Chowdary, principal investigator for the FLT180a program, presented the data…

People often assume that loving someone with hemophilia — and in my husband’s case, epilepsy, too — must come with endless patience, unshakable optimism, and the kind of soft, gentle pity we reserve for those we imagine can’t carry their own weight. But mine is a different kind of…

More than 1 in 10 men with hemophilia reported being restricted in their sexual functioning, which, in turn, had a negative impact on their quality of life, per data from a new survey-based study conducted in the Netherlands. The study also found that this…

You are not alone. Coping with hemophilia as a patient, caretaker, or medical provider can seem overwhelming at times. When I am overwhelmed, have a question, or just want to talk to someone who I know will “get it,” I reach out to my “blood sisters” and…

My favorite shows are “Criminal Minds,” “Bones,” and the “Law and Order” franchise. In these police procedural crime dramas, the suspense and action are exciting and the plot twists surprising. Episodes regularly depict hostage situations. Watching actors portray the fear and horror one must…

In the hustle and bustle of daily life, we often overlook the extraordinary within the ordinary. My husband, Jared, has hemophilia, and we’ve found that living with the bleeding disorder has a way of sprinkling our lives with one-of-a-kind situations that might seem mundane to us but are…

A recent study involving adolescent and young adult patients with hemophilia, to evaluate racial and ethnic disparities in following recommended clotting factor treatment regimens, chronic pain and quality of life, indicated that non-white patients report more chronic pain and worse quality of life. The research paper, “Racial Differences in Chronic…

Dealing with a bleeding disorder can weigh heavy on your wallet. To help you manage the financial cost, we’re sharing a few tips we’ve learned from the Hemophilia Federation of America. MORE: Economic costs of hemophilia, large and lifelong, detailed in report Consider your costs Bleeding…

In this video shared by Colleen, learn 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…

This past week has been a whirlwind of activity for our family. My husband, Jared, who has severe hemophilia B, experienced a knee bleed that required careful management. But that didn’t stop him from fulfilling his responsibilities around the house and making progress with his budding bottled food business.