Search results for:
The Medicines and Healthcare Products Regulatory Agency (MHRA) for the U.K. has approved the resumption of patient enrollment in BioMarin Pharmaceuticals’ Phase 1/2 clinical trial evaluating the investigational gene therapy BMN 270 as a treatment for severe hemophilia A. BioMarin suspended patient dosing in the trial in June because of increasing levels…
In my five-plus years of writing columns for Hemophilia News Today, I’ve missed two weeks. Many times, I feel that I’m repeating myself as I struggle to write something that matters to the bleeding disorders community. I share daily experiences as I navigate bad and good moments with…
How to Deal With the Financial Cost of Hemophilia
Dealing with a bleeding disorder can weigh heavy on your wallet. To help you manage the financial cost, we’re sharing a few tips we’ve learned from the Hemophilia Federation of America. MORE: Economic costs of hemophilia, large and lifelong, detailed in report Consider your costs Bleeding…
My son Caeleb recently started college. He’s enjoyed the beginning of school and appreciates the flexibility of his schedule, but there’s one problem: his mobility. Caeleb lives with severe hemophilia A with an inhibitor. Persistent bleeding into his right knee and ankle resulted in irreparable damage and…
Through my journey of being an advocate for two sons with hemophilia, I’ve continued to learn life lessons that enrich my soul and make me a better person. While it’s true that raising Julian and Caeleb involved the heavy burden of managing their bleeding disorders, I’ve discovered…
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…
A computer-aided diagnostic tool using artificial intelligence (AI) can accurately detect joint bleeds in adults with hemophilia, a study showed. The researchers said the findings may lead to a way for patients to obtain ultrasound images at home, rather than traveling to a facility. “The CAD [computer-aided diagnosis] system…
People with hemophilia may benefit from physiotherapy and rehabilitation programs intended to manage bleeding and joint disease (arthropathy), but more research is needed to better understand those programs — and their duration — that might be of most help, a review study says. The review, “Recent advances in musculoskeletal…
Priscilla Oren, a member of the hemophilia community, recently shared her family’s history with me. Her son was a victim of the “hemophilia holocaust” in the 1980s. During that time, many people with hemophilia contracted HIV/AIDS and hepatitis from the factor products used to treat their bleeding…