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…

We finally got a dog! She is a 3-month-old purebred golden retriever. It was love at first sight when we saw her at the pet store. From our very first interactions, we knew she was the one. We named her Lucky because the golden color of her coat is associated…

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…

Life in the hospital can overwhelm us and leave us beaten down, as if we fought a war to end all wars. We exist by preparing for the next nurse, technician, or doctor to enter the room to check on our loved one. In our case, “MacDonald the Younger” suffered…

I have never heard anyone say, “I wish I could relive middle school.” It is a time when bodies rage with hormones and kids are gangly and awkward with acne and questions. It is also a time when grace is not extended to others. Kids can be mean.

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…

As I write this, it’s the end of the month again, that time when bills are due, debts rack up, and stress is high. I often can’t help but fantasize about what life might be like if I were more successful as an entrepreneur. In the business world, success is…

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…