As anyone affected by a rare disease knows, treating the illness while trying to go about everyday life is an expensive undertaking.  But exactly how expensive — in terms of direct and indirect costs across rare disease populations — might still come as a surprise: almost…

As an expectant mother, I dreamed about my son’s future. I imagined the sound of his voice, the daily rituals we would create together, and the way I’d simply hold and love him with every part of my being. When my first son, Julian, came into the world, my…

My husband, Jared, has fond memories of his school days when he was younger. He went to an all-boys combined elementary school and high school, where roughhousing and horsing around with friends were common. He and his classmates sometimes were crude and rowdy, he says, but they were all very…

Children and teenagers with hemophilia are considerably more physically active than adult patients, possibly reflecting more recent emphasis on the benefits of exercise and the arrival of better treatments, according to a recent review study. Yet, how physically activity relates to bleeding events remains unclear, its researchers wrote, and long-term…

Both swimming and hydrotherapy can improve functional capacity in hemophilia patients, according to data from a recent study. Of those two types of aquatic exercises, however, hydrotherapy was associated with the most significant functional improvements in these patients. Those findings were reported in the study, “Aquatic…

Although my sons, now 15 and 24, are different as night and day, they both began asking questions about hemophilia at about age 5. I tackled the tough issues they wrestled with, always acknowledging that their problems contained merit. At 5 years old, they each asked the same question that…

My youngest son, Caeleb, became best friends with a girl named Taylor in sixth grade. Then, our family moved away to Texas, but returned to New Mexico two years later. Caeleb and Taylor now live an hour apart. Despite it all, they have remained close. It is remarkable for a…

For people with hemophilia B, switching to Rixubis (nonacog gamma) as a factor IX (FIX) replacement therapy was not associated with increased bleeding rates, dose changes, adverse blood clotting events, or the development of inhibitors among patients with moderate to severe forms of the disease,…

I have a number of friends working as financial advisors. From time to time, they offer me life insurance policies, stock market deals, and other similar investments. As a young mom and businesswoman, I am right within their target market. I take interest in all sorts of financial tools…

A research study is asking people with hemophilia and other inherited bleeding disorders living in the U.K., U.S., or Germany to take part in a survey evaluating how the COVID-19 pandemic is affecting the mental health of those with these diseases. The four-part survey, which can be…