In the Netherlands, children and adults with hemophilia participate in sports as much or more than people from the general population, according to a study. The findings also indicated that disease severity affected sports participation only in adults, and that children with hemophilia were more willing to participate in…

March is Bleeding Disorders Awareness Month, when patients and families who live with bleeding disorders post facts on social media and share their stories to educate those with little understanding of how a chronic illness affects daily life. I have participated in numerous events to educate the community, and this…

The events of last weekend proved chaotic and unexpected. On our way to see a movie, my family was involved in an automobile accident that left my vehicle inoperable. The person who caused the collision sped away, leaving us alone and frightened. I called 911, and a fire truck, ambulance,…

I bought a new mattress and anxiously awaited its delivery. At last, the furniture truck rumbled in the cul-de-sac and stopped in my driveway. Seeing my new, plush, dreamy mattress rolled up like a carpet and crinkling inside its plastic wrap was odd, but I knew it’d soon offer a…

BioMatrix Specialty Pharmacy has announced the six recipients of this year’s Memorial Scholarship Program, with each receiving $1,000 to support their higher education. The program, a partnership with the Hemophilia Federation of America (HFA), honors the memory of people who uniquely impacted the bleeding disorders community…

When I was a young girl, I sat next to my father while he self-infused. I handed him his supplies — butterfly needles, syringes, alcohol, cotton, and medical tape — as he needed them. I watched every step. The factor was mixed, then drawn into…

AMT-061 (etranacogene dezaparvovec), an investigational gene therapy uniQure is developing to treat hemophilia B, successfully increased factor IX (FIX) activity and controlled bleeding — while markedly reducing the need for other treatments — in the Phase 3 HOPE-B clinical trial, top-line data show. These findings will be presented at…

Higher replacement factor doses and the use of preventive treatments are just two ways prescription practices for hemophilia have changed over time, according to a survey of specialists over 22 years. The surveys also show the impact of Hemlibra’s (emicizumab-KXWH) approval and showcase the expectations for gene therapy,…

I taught choral music in a few local school districts in the Houston metropolitan area in a former life. One year, a friend of mine in the bleeding disorders community asked if I had a group that could provide entertainment at the hemophilia Christmas party. I told her…

Most people probably have a handful of good stories to tell at parties, but someone with a rare medical condition never is at a loss for a new tale to tell. I recently led a workshop to help people in the bleeding disorders community craft their “elevator pitches,” which…