Patrice Thomas has utilized her skills as a women’s healthcare advocate to learn about marginalized communities and support structural change. Through her current position at the Hemophilia Foundation of Michigan (HFM), Patrice is bringing together women with hemophilia and healthcare providers to educate and break down barriers…

Treatment with Alprolix improves bleeding control, reduces the need for infusions, and improves patient compliance among people with hemophilia B, according to a review of real-world data. The study, “Real‐world data demonstrate improved bleed control and extended dosing intervals for patients with haemophilia B after switching…

Parenthood is full of surprises. Some are delightful, some are exhausting, and some are completely unpredictable. Add hemophilia to the mix, and everything becomes a little more complicated. Over the years, I’ve learned that balancing relationships, parenting, and a chronic condition is not about perfection. It is about understanding…

I’m 25 weeks pregnant. Now that I’ve passed the halfway point of my pregnancy, I’m full of thoughts about the future. What happens when I give birth? After I give birth? When it sinks in that we are parents? Based on my ultrasound scans, it looks like we will have…

Researchers report that hemophilia interferes with patients’ sexual activity and is linked to worse health status. The study titled “Sexual Health in Patients with Hemophilia; The Insights from the Patient Reported Outcomes, Burdens and Experiences (PROBE) Study,” appeared in the journal Blood. Previous results from a small…

Clinical trials for hemophilia are essential to advance medical knowledge and develop treatments. But for decades, trials related to hemophilia enrolled only men, given the assumption that women were only carriers of the disease. Consequently, women with the disorder were denied the opportunity to participate in…

A new online service allows patients with bleeding disorders like hemophilia to share important information about their treatment and bleeds with their healthcare team in real time. MORE: Five tips for living healthily with hemophilia.  The HemaGo XChange portal was created by Novo Nordisk A/S as an update to their existing…

I recently spent an afternoon with a group of parents raising young adults with hemophilia. They were part of a newer generation, people who grew up with a little more information, a little more community support, and slightly more medical options than what my husband, Jared, had access…

Effectiveness in controlling bleeds and the potential for less frequent use of a treatment are two priorities people with hemophilia place on a potential gene therapy, and both ranked slightly higher than safety, a survey study of patients in the U.S. reports. The study, “Patient preferences and…

The World Federation of Hemophilia states that any person, male or female, with factor levels below 40 percent has hemophilia. However, conventional medical wisdom has not caught up. Women who have abnormal bleeding should be assessed for hemophilia, particularly when they have a family history. Yet too…