The energy in the room was unmistakable. Before the official start of the Hope Conference in Orlando, Florida, last week, a group of women had been invited for a special preconference event — a day set aside just for us. It was marked by laughter, the sharing of stories,…

In the wake of my mother’s tragic passing in February and the havoc wreaked by Hurricane Ian last year, my living space in Florida has undergone a profound transformation. My mother and I had always depended on a cleaning person to keep our condominium tidy. Those services have been…

The European Medicines Agency’s Committee for Medicinal Products for Human Use (CHMP) has recommended Hemlibra’s (emicizumab) approval be expanded to include people with moderate hemophilia A without inhibitors. “We’re very pleased that the CHMP’s recommendation brings us closer to potentially transforming the day-to-day lives of people in the…

When I think back to the early days of raising my first of two sons with hemophilia, I see how I have changed. Back then, I was a scared young woman trying to figure out what the diagnosis of a rare medical condition meant. I found myself living…

Many times, when I look back at how I handled my sons’ hemophilia care, I quickly remember the poor choices I made. I ache over decisions that caused heartache, and allow them to capture my full attention. Too often, I fixate on how one decision affected life choices, often leading…

A multi-institute research collaboration has received a $12 million grant from the National Heart Lung and Blood Institute to understand what’s behind limitations in gene therapies currently being tested in people with hemophilia A. The goal is to use this information to develop safer and long-lasting gene therapies…

An online academic training program has been launched globally for people interested advocating for bleeding disorders care and treatment in their respective countries, as part of a partnership between the World Federation of Hemophilia (WFH) and the New York University (NYU) Robert F. Wagner…

Artificial intelligence (AI) can comb through ultrasound scans to detect joint bleeding and inflammation occurring as a result of hemophilia, a study has found, suggesting it may help doctors make quicker and more accurate diagnoses. “AI models have the potential to aid diagnosis and enable earlier therapeutic interventions, helping…

Life is awful from time to time. As someone with mental illness who is married to a person with hemophilia and epilepsy, I am no stranger to that thought. Various things can trigger me to ruminate on the thought that life is fickle and occasionally sadistic. It could be…

I am a woman who is extremely blessed. I have a roof over my head, food on the table, a little bit of money in my pocket, and two amazing sons. The best part is that I have an amazing husband to share these blessings with on this…