I am a fierce advocate for my sons. I question doctors professionally. I say no and ask for other options. I have even found new research and treatment options to offer physicians. I do not give up and even risk being known as one of those moms. If I…

I have been struggling at home lately. I always pictured a peaceful and fulfilling married life. As a wife, I thought I would be queen of my home. Each corner of our house would be filled with my favorite decorations, and our fridge, pantry, and bar would be…

Women with genetic blood disorders, including those who are carriers of hemophilia A and B, face multiple uncertainties surrounding their diagnosis, according to a recent interview-based study. Many women claimed to have been misdiagnosed initially and did not receive a correct diagnosis until after the disease had…

The National Institutes of Health (NIH) awarded the DNA Medicine Institute (DMI) a $1.5 million grant to advance a quick and easy way of monitoring factor VIII (FVIII) and Hemlibra (emicizumab) blood levels in people with hemophilia A, especially those in developing countries. DMI,…

The first participant was dosed with the investigational gene therapy treatment SB-525 (giroctocogene fitelparvovec) in a Phase 3 clinical trial in men with hemophilia A, according to developers Pfizer and Sangamo Therapeutics. AFFINE (NCT04370054) is a pivotal trial, which means it is intended to…

The National Hemophilia Foundation (NHF) is inviting the country’s bleeding disorder community and others to participate in a first virtual Unite for Bleeding Disorders Walk on Oct. 10. The walk provides a means to raise funds for and awareness of disorders such as hemophilia. Due to the…

Feeling hopeless? Wondering how you will possibly find the energy to go on? Wanting to smash your alarm clock, pull your covers over your head, and hide in your bed all day long? You are not alone. Coping with hemophilia day in and day out, as a patient or a…

A recall on Ferring Pharmaceuticals‘ intranasal desmopressin compounds — used to treat mild to moderate hemophilia A and von Willebrand disease type 1 — is expected to affect the availability of these products until at least mid- to late-2021, according to an advisory from the…

Using prednisone in combination therapies increases an infection risk but also better raises the likelihood of patients with acquired hemophilia A (AHA) achieving complete remission than does prednisone given alone, a Dutch study found. The retrospective study, which evaluated patients diagnosed over a 27-year period, also found that…

An upcoming episode of the TV series “Advancements,” hosted by Ted Danson, will be dedicated to current and future research and therapeutics for inheritable bleeding disorders. The new episode will feature work developed by the National Hemophilia Foundation (NHF) and explore the non-profit’s programs in bleeding diseases, such…