The National Organization for Rare Disorders (NORD) has recognized pharmaceutical company CSL Behring for pioneering Idelvion (rIX-FP), its therapeutic medicine against hemophilia B. “We are proud to present the team at CSL Behring with a 2017 Industry Innovation Award for the important work they are doing to address the needs of patients…
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While searching for content ideas for a client, I stumbled on an Instagram post that immediately caught my attention. “Human beings are seasonal,” the post stated — more or less, as I can’t recall the exact wording. But I’ve managed to internalize three key points on the subject: Life has…
In a week’s time, I’ll be a 20-something married woman. I’ll be transitioning from my current “single” civil status to writing “married” on government forms. Just a few days ago, I had the sudden realization that I won’t be using my current name for much longer. Soon, I’ll be taking…
World Hemophilia Day, an annual effort to raise awareness of hemophilia and other bleeding disorders, is on April 17, and this year, the focus is on the importance of a prompt, accurate diagnosis as a key step toward achieving good health for people…
Researchers report that the Medtep Hemophilia online platform helped hemophilia patients improve their adherence to preventive treatment, while increasing their quality of life and their perception of their illness. The study titled, “Effectiveness of the Medtep Hemophilia online platform for adherence to prophylactic treatment in haemophilia patients:…
Specific genetic changes may account for a larger proportion than previously thought of children with severe hemophilia B who develop inhibitors against coagulation factor IX replacement therapy, according to an international study. The study, “Inhibitor Incidence In An Unselected Cohort Of Previously Untreated Patients With…
Nearly all adults with acquired hemophilia A (AHA) safely achieved complete remission with either standard or low doses of rituximab when combined with corticosteroids and cyclophosphamide, a small study shows. Key features of disease remission, including an increase in clotting factor levels and a reduction in inhibitor levels,…
Based on feedback from the hemophilia B community, Aptevo Therapeutics announced that a 3,000 international unit (IU) vial assay of Ixinity is now available for patients preferring the convenience of a larger assay over the smaller IUs on the market for this intravenous recombinant factor IX. The…
A gene therapy approach acquired by uniQure was recently covered in two new patents, one issued in the United States and one in Canada, broadly covering ways of treating bleeding disorders that include hemophilia B, the company announced in a press release. The therapy has a nucleic acid encoding the…
Two new patients in the U.S. have received Hemgenix (etranacogene dezaparvovec), the first gene therapy to be approved for hemophilia B, per new reports. The therapy was first administered last year in May to a patient at UC San Diego Health, per a University of California, San Diego, news…