My husband, Jared, and I were recently talking about Rare Disease Day, which falls on Feb. 28. As a person with hemophilia, Jared has faith in its purpose of raising awareness about rare health conditions and the people who live with them. Having dabbled in hemophilia and mental health…

As I write this, it’s Nov. 1 and we’re observing All Saints’ Day. On this day, I remember my mom, who passed away last June. Her final resting place is many islands away from where I live, so I am unable to pay her a visit. Nevertheless, I offer…

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…

Regeneron Pharmaceuticals and Intellia Therapeutics are expanding their collaboration to develop hemophilia A and B treatments using the CRISPR/Cas9 gene editing technology. The two companies signed a six-year agreement in 2016 to develop, license, and commercialize gene editing-based therapies. “We’re pleased to expand our work…

The U.S. Food and Drug Administration has approved Novo Nordisk’s Rebinyn (nonacog beta pegol) as a routine preventive treatment for bleeding episodes in adults and children with hemophilia B. Rebinyn, sold under the brand name Refixia in the EU, is a replacement therapy that had originally…

In a previous column, I shared Tara Blakely’s journey to earning a black belt — an accomplishment nearly 30 years in the making, interrupted by life, motherhood, undiagnosed hemophilia, and everything in between. Impressive, certainly. I was equally impressed by her 110-pound weight loss. I’ve struggled with my…

The first participant has been dosed in a Phase 2b clinical trial that’s assessing the safety and efficacy of SerpinPC in people with hemophilia B who have inhibitors, according to an announcement from its developer, Centessa Pharmaceuticals. “We are excited to be further evaluating the potential of…

I recently spoke to members of the Sangre de Oro Chapter of the National Hemophilia Foundation, based in Albuquerque, New Mexico. They are my family. We gathered to “kick off” the upcoming Unite for Bleeding Disorders walk. We had a friendly competition to see whose team…

With 2022 soon coming to a close, I can’t help but wonder what kind of year is going to take its place. So much has happened in the past three years, since my daughter, Cittie, was born. Yet when I look at my pictures then, I don’t feel like I’m…

There are moments that forever alter lives. Sometimes we celebrate educational goals, while others encounter the excitement of new love. Other times leave us breathless as we attempt to rise again from a catastrophic event, unsure whether we will ever recover. Whatever we experience, our worlds change and none of…