The presence of inhibitors and excessive body weight increase the sense of disease burden felt by parents of children with moderate to severe hemophilia, a study reports. The study “Burden on parents of children with hemophilia: the impact of socio- demographic and child’s medical condition” was published in…
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To encourage more women to take part in disease research, the Patient-Centered Outcomes Research Institute (PCORI) has chosen the Hemophilia Federation of America (HFA) and its FIRST project to receive a Eugene Washington PCORI Engagement Award. The HFA’s FIRST project stands for Females in Research Sharing and…
In my experience, raising two children with a chronic illness includes the usual worries that parents and other primary caregivers often face. It also creates issues that directly address medical needs and concerns related to treatment. For instance, not every family deals with spontaneous bleeding into the joints. For…
I have big dreams for my sons. I want them to go to college, have successful careers, and find loving partners. I hadn’t thought that these things would be out of reach for either of them. But I did believe at one time that my mighty warrior Caeleb would be…
An 87-year old woman with acquired hemophilia A (AHA) showed no adverse events or major bleeding events after starting on Hemlibra (emicizumab). The findings suggest that Hemlibra may be a better option for bleeding prevention in AHA patients than bypassing agents, the team said. The study, “…
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BioMarin Preparing to Submit Marketing Authorization Applications for Valoctocogene Roxaparvovec
BioMarin Pharmaceuticals is planning to submit marketing authorization applications to the U.S. Food and Drug Administration (FDA) and the European Medicines Agency (EMA) seeking approval of valoctocogene roxaparvovec, its investigational gene therapy for the treatment of adults with hemophilia A, before the end of the…
My wife and I were trying to find the perfect gift for one of our favorite people. We needed to find a bow tie, but not just an ordinary, humdrum kind. It must have a road map from one place to another. Our friend, who happened to be one of…
My 13-year-old son Caeleb, who had severe hemophilia A and an inhibitor, has not had a bleed in five years. For three of those years, he received a daily infusion with a plasma-derived product, and for the past two years, he has been on a treatment that…
Bayer is recalling two lots of product vials that have been wrongly labeled as Kogenate FS antihemophilic factor (recombinant) 2000 IU, when in reality they contain Jivi antihemophilic factor (recombinant) PEGylated-aucl 3000 IU. Both Kogenate (BAY14-2222) and Jivi (BAY 94-9027) are factor VIII replacement therapies…
A few days ago, I gave my husband, Jared, a factor IX infusion for a back bleed. It wasn’t so bad that he couldn’t move around, but in his words, it felt “annoying.” He was already suspicious about it the night before, but he decided to wait it out,…