My husband, Jared, is a capable person. He has a degree in business management and excelled in elementary and high school, consistently ranking at the top of his class. He’s an accomplished swimmer, an excellent cook, a decent handyman, and a wonderful dad. I’m not biased as his…
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Proper nutrition is lacking in almost half of children with hemophilia in Iraq, with a significant portion of these children underweight compared to peers and a sizable number overweight, a study of pediatric patients in an Iraqi province found. The work also showed an association between low levels of parental education…
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…
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:…
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…
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…
Hemophiliacs in Europe have never had so many reasons to feel hopeful about the future, thanks to significant recent scientific advances. But “vested interests, entrenched systems, and blatant, outright corruption limit access” to even basic healthcare in some Eastern European countries, says Amanda Bok, CEO of the Brussels-based European…
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…
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…
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…