1. Why is this survey being conducted? The purpose of this survey is to gather information from individuals with hemophilia so that Bionews and its partners can bring better understanding, advocacy, and provide our readers more relevant editorial content to the larger hemophilia community. 2. What will I do? If…
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In honor of Bleeding Disorder Awareness Month, celebrated in March, CVS Health is donating more than $260,000 to national and local hemophilia and bleeding disorder programs across the United States. Although there’s no exact number of how many people are now living…
Switching from standard half-life factor replacement therapies to the extended half-life treatment Elocta (efmoroctocog alfa) improves bleed control among people with hemophilia A. That’s according to an analysis of data from the real-world A-SURE study (NCT02976753), which showed that switching to Elocta, sold as Eloctate in the…
I have carried a pocket calendar since my junior high school years. I recently came across an old calendar from 10th grade. Pictures of playful puppies were on the cover, and ticket stubs were tucked inside the sleeve. I was overwhelmed by memories of my younger days and the happiness…
This past week my adult son, Julian, made a decision that I didn’t like. I wanted badly to tell him how I felt and that his choice may not be in his best interest. I don’t think it’s essential to mention what he did as much as my reaction to…
One Thanksgiving season, nothing seemed to go right. Both of my sons suffered in completely different ways. “MacDonald the Older” faced bullies who looked forward to nothing more than terrorizing him, while “MacDonald the Younger” faced hospitalizations that lasted for lengthy periods. Hemophilia took its toll on both…
A single dose of the gene therapy Roctavian (valoctocogene roxaparvovec-rvox) continues to prevent bleeds and the need for preventive treatment (prophylaxis) for up to five years in most treated men with severe hemophilia A, according to final Phase 3 trial results. Activity of factor VIII (FVIII), the clotting…
As my husband, Jared, and I grow deeper in our marriage, the reality that we will spend our entire lives with chronic illness becomes increasingly clear. Jared has severe hemophilia B and a seizure disorder, which I learned about when we started dating. Meanwhile, I was diagnosed with…
Bleeding disorder patients and their supporters are encouraged to participate on Sept. 18 in Unite Day, a national virtual event aimed at celebrating the community and underscoring the need for treatment for all. Unite Day complements participation in the annual Unite for Bleeding Disorders Walk, both presented by the…
Though the school year is nearly over for my youngest son, Caeleb, who is 15, he just returned to in-person learning for the first time since the pandemic began. Caeleb, who has hemophilia, is a high school freshman and a new student to the school district this…