With an emphasis on patient advocacy, supporters of World Hemophilia Day will participate in a variety of activities on April 17 to heighten awareness of the disease and other bleeding disorders that are thought to affect 1 in 10,000 people globally. The World Federation of Hemophilia (WFH) organizes the…

The National Organization for Rare Disorders (NORD) has recognized pharmaceutical company CSL Behring for pioneering Idelvion (rIX-FP), its therapeutic medicine against hemophilia B. “We are proud to present the team at CSL Behring with a 2017 Industry Innovation Award for the important work they are doing to address the needs of patients…

First in a series. Every person is unique, shaped by the combination of their upbringing, education, cultural influences, values, attitudes, and behaviors. No two people are exactly alike. Even identical twins, while genetically similar, have differences, including their fingerprints. Medical conditions can also emphasize a person’s individuality. While many may…

While nearly one-third of people living with hemophilia are female, a new global survey reveals that many of these patients remain undiagnosed due to systemic healthcare barriers and social stigma. Researchers representing the World Federation of Hemophilia (WFH) are calling for a coordinated effort to improve diagnostic access…

Dust off those backpacks, girls, it’s time for the school year to begin! When your daughter has hemophilia or another type of bleeding disorder, sending her to school can be overwhelming. But we’ve come a long way since my school days. Children today are fortunate to have access to…

The World Health Organization (WHO) executive board approved a resolution designed to improve access to diagnostic testing and treatment for people with hemophilia and other bleeding disorders. The resolution calls on WHO member states to take actions to improve access to quality care for people with bleeding disorders. It…

In the fall of 2023, I was at a work conference in Indianapolis and headed down to the hotel lobby to meet a colleague for lunch. I was excited, as we were going to eat my favorite food: Ethiopian! Suddenly, I felt a sharp, shooting pain in my hip. It…

In my work as a hospice chaplain, I take the same routes when I drive to patients’ homes, assisted living facilities, or hospitals. Without thinking about changing lanes or adjusting my speed, my mind settles into autopilot, and I often arrive at my destination without realizing how far I’ve…

Imagine a bank account. When depositing money, the ideal is to have enough to cover expenses, bills, and some fun things. But when the withdrawals amount to more than the available money, there’s a crisis. At that point, using credit cards or applying for impossible-to-pay-back loans may become necessary. The…

Self-reported health outcomes of hemophilia patients provide useful and clinically valuable data on the efficacy of treatments, a population-based study shows. The study, “Real-world utilities and health-related quality-of-life data in hemophilia patients in France and the United Kingdom,” was published in…