It seems as if there is a day for everything: there’s National Wear Red Day, Boss’s Day, Rare Disease Day, Love Your Pet Day, and even National Margarita Day. And months are also observed for causes such as Blood Donor Month, Breast Cancer Awareness Month, and National Yoga Month. From…
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In support of Bleeding Disorders Awareness Month in March, the Plasma Protein Therapeutics Association (PPTA) is providing a global outlet for patients who wish to share their experiences, advocate for therapy access, and thank plasma donors. The campaign — called “How Is Your Day?” — seeks to heighten awareness of…
Recently, I’ve taken to the ukulele. I love its diminutive size, how its four strings (versus six on a guitar) are perfect for my tiny hands, and the happy sound it produces. (Our neighborhood ukulele store is aptly named Happy Music.) In the past month, I’ve purchased a couple of…
The Institute for Gene Therapies (IGT) has launched, with the aim of maximizing the potential of gene therapies in genetic disorders such as hemophilia. Comprised of industry leaders, scientists, and patient advocates, the IGT’s overarching goal is to set the foundation for a modernized regulatory and reimbursement…
Takeda presented new real-world data highlighting the underdiagnosis of hemophilia A and B, supporting the effectiveness and safety of its hemophilia therapies — Advate, Adynovate, and Feiba — and discussing potential benefits of personalized therapies. The company presented these latest data at the 13th Annual Congress…
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The Stories We Don’t Hear
It was a beautiful Sunday afternoon and I encouraged my son Caeleb to take our dog, Betty, for a walk. He gathered the necessities of a 14-year-old — headphones and music — and put Betty on her leash and off they went. Encouraging my son to be active is difficult.
Carrier moms — those whose sons or daughters have hemophilia — inspire me. I see you struggle, sometimes daily, with the realities of parenting a child who has a chronic condition. Your tireless dedication necessary to ensure a child’s safety and proper medical treatment can be challenging and…
Catalyst Biosciences has announced new clinical data supporting the safety and efficacy of its lead candidate therapies for treating hemophilia. Factor IX (FIX) dalcinonacog alfa (DalcA) was found to safely prevent bleedings in adults with hemophilia B, while factor VIIa (FVIIa) marzeptacog alfa (activated) (MarzAA) was…
We all have a story about a time when our lives changed. Some memories elicit the best of times, while others recall deep pain. For me, the day my eldest son, “MacDonald the Older,” was diagnosed with severe hemophilia proved surreal. I had no idea what a bleeding disorder…
Recently, I was browsing the website of the National Hemophilia Foundation and came across a series of videos encouraging people with hemophilia to have regular testing for inhibitors. As I watched the videos, it occurred to me that women with hemophilia don’t talk much about inhibitors.