Hemophilia News Today brought you daily coverage of important discoveries, treatment developments, clinical trials, and other key events related to hemophilia throughout 2019. As we look forward to bringing you more news in 2020, we would like to remind you of the 10 most-read stories of 2019. No.
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I like to think my wife, Cazandra, and I did a decent job of teaching our two sons, Julian and Caeleb, how to manage their bleeding disorders. We drilled into their heads the importance of maintaining health insurance, as their hemophilia medications are too expensive to afford…
Hemlibra (emicizumab) continues to safely and effectively prevent bleedings in children and adults with hemophilia A, regardless of developing neutralizing inhibitors (antibodies) against synthetic factor VIII (FVIII), according to nearly three years of data from four Phase 3 clinical trials. These and preliminary real-world safety findings from a European…
The Hemophilia Federation of America (HFA) is seeking a variety of historical artifacts and records to add to its archival project in honor of its upcoming 25th year of helping the bleeding disorders community. The nonprofit is collecting vintage medical equipment, supplies, rally posters, newsletters, documents, personal journals, diaries, and…
Last week, I gave in to my 79-year-old mother’s pleas to travel from Florida to the Midwest for a family gathering in Illinois. She is immunocompromised, and I am her caregiver. The pandemic has kept us off public transportation, as she is vulnerable to COVID-19 and any other infection from…
Recommendations for vaccination practices for patients with hemophilia should be reassessed in an effort to minimize fear and emphasize the importance of vaccination to prevent infections, suggests a survey among physicians in Germany. Data from the PEDNET registry, a database of children with hemophilia, suggest that vaccination in close…
Individually tailored prophylaxis, or preventive treatment, with Jivi (damoctocog alfa pegol) nearly halved the number of annual bleeding episodes in people with severe hemophilia A who had previously been on another replacement therapy, according to a Phase 4 post-marketing study. Researchers also observed that none of the patients…
Nearly one-fifth of patients with mild hemophilia admitted to treatment centers in the U.S. are female, according to a large study of nearly 30,000 people. Yet, women and girls make up a smaller proportion of patients with severe or moderate hemophilia, ranging from less than 0.5% to a little…
My Life, Our Future (MLOF), a national program founded by leaders in the hemophilia and blood disorder community, marked Feb. 28 — Rare Disease Day — by launching the world’s largest research repository of its kind to researchers and scholars. The program is opening to U.S. scientists and will expand to worldwide scientists in 2018.
There’s something humbling about watching someone relearn how to walk. Not as a toddler, and not for the first time, but as an adult who already knows what walking used to feel like. My husband, Jared, has severe hemophilia B, and for years, his right ankle has been what’s…