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…

Last week, I set out in my car to donate some household items to Goodwill. I’ve been there probably a dozen times, but this time I drove past the Goodwill building twice. Why? Because my community is missing signs. All kinds of signs. Street signs, building signs, and even stop…

Dexamethasone, a steroid with immunosuppressive and anti-inflammatory properties, may temporarily increase the efficacy of one-time gene therapy when given at later time points, a study in mice suggests. Lab results showed that dexamethasone increased the levels of factor IX (FIX) — the missing clotting protein in hemophilia B —…

Last month, I had the privilege and the honor of being one of 60 attendees at the Mild Matters Summit in Tulsa, Oklahoma, organized by the Hemophilia Federation of America (HFA). The summit aimed to empower those with mild bleeding disorders by providing essential information and tools to…

As I entered my son’s bedroom this morning to turn on his light and wake him up, I heard him say a phrase that sent shivers down my spine. Caeleb, my boy, said, “Dad, my ankle hurts.” My first instinct wanted to allow him extra time to get himself together.

The other day, I found an old document from my husband Jared’s last hospital stay — the one after his freak accident on a pool slide. I’d written about it before, but seeing the discharge papers brought it all back. The memory feels a little funny to us now…