When I worked for the Hemophilia Federation of America (HFA), I was incredibly grateful for its dedication to bringing awareness to the needs of women with hemophilia, many of whom had a mild form of the disorder. As I observed our community events, I realized that a group was…

I’ve been writing about life with my husband, Jared, who has severe hemophilia B and epilepsy, for many years now. In doing so, I’d often refer to myself as a caregiver in passing. But here’s something that might surprise you: This column is the first time I’m openly…

I was at the Coalition for Hemophilia B’s Annual Symposium this month in Orlando, Florida — surrounded by my community, sharing meals and meaningful conversations — when it happened. No bump. No injury. No accident. I was literally just standing in the elevator when I felt it: a sudden,…

The U.K.’s Medicines and Healthcare products Regulatory Agency (MHRA) has approved Hympavzi (marstacimab) for the prevention of bleeding episodes in people with both hemophilia A and hemophilia B, ages 12 and older. The therapy, already approved in the U.S. and the European Union, is designed to…

As I sat in my office chair working on bills and other household needs this past Saturday afternoon, my youngest son, Caeleb, approached me and asked if we could talk for a few minutes. His mannerisms told me he needed to share something dire, so I stopped typing, turned to…

As I transition to a new job in a new city, I’m meeting new colleagues at work. In these early days of getting to know everyone, I share only what I’m asked. I’ll share more of my story in time, especially since joining a team requires trust and acceptance, but…

The first hemophilia B patient in Austria has been treated with the gene therapy Hemgenix (etranacogene dezaparvovec), according to its developer, CSL Behring. “We are proud and grateful to offer hemophilia B patients in Austria a treatment option that has the potential to transform their lives,” Beate Natmessnig,…

World Hemophilia Day is April 17, and this year it will focus on the challenges of women and girls living with hemophilia and other bleeding disorders. The World Federation for Hemophilia (WFH) said the theme of its campaign is “Access for all: women and girls bleed too.” “Today,…

Sometimes I hear other women joke about their husbands being their “extra child,” and I can’t help but nod in understanding. Living with Jared, who has severe hemophilia B and a seizure disorder, means I occasionally slip into caregiver mode with him, too. But here’s what might surprise you:…

The gene therapy BBM-H901 (dalnacogene ponparvovec) has been approved in China for adults with moderate to severe hemophilia B, making it the first approved gene therapy for the disorder in the country. BBM-H901 was developed and will be manufactured by Belief Biomed (BBM), but it will be commercialized…