I recently spent an afternoon with a group of parents raising young adults with hemophilia. They were part of a newer generation, people who grew up with a little more information, a little more community support, and slightly more medical options than what my husband, Jared, had access…
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Hemlibra (emicizumab-kxwh) safely supports joint health in children with hemophilia A without inhibitors through three years of treatment, according to interim data from a post-marketing study in Japan. The ongoing study, AOZORA (jRCT1080224629), is evaluating the long-term safety of Hemlibra and its impact on joint health in children ages…
Hemophilia C is a rare bleeding disorder that affects the blood’s ability to clot.
Moving is challenging. Moving means packing, having to decide what to keep and what not to keep, learning a new place, having to find a new grocery store, a new hair and nail salon, a new healthcare provider. Doing all that this time offered an opportunity to remember and…
I had previously heard about the term health anxiety obsessive-compulsive disorder (also known as hypochondriasis or illness anxiety disorder), so one day I decided to research its symptoms. Frequent visits to doctors and the emergency room, seeking reassurance that you are not ill from physicians, friends, and family, and…
Shellye Horowitz shares her story of working through the ups and downs of hemophilia, from carrying factor to school every day to creating safety plans and finding supportive colleagues. She reflects on dreaming big, adapting with confidence, and the belief that hemophilia doesn’t…
Geneventiv Therapeutics said it had a “positive and constructive” meeting with the U.S. Food and Drug Administration (FDA) on its plan to develop GENV-HEM, a gene therapy for hemophilia A. The meeting “represents a key regulatory milestone for Geneventiv,” Damon Race, CEO of Geneventiv, said in a…
Hemophilia B is a rare genetic bleeding disorder that impairs the blood’s ability to clot properly.
Biomarin Pharmaceutical is looking to sell off rights to Roctavian (valoctocogene roxaparvovec-rvox), its approved gene therapy for hemophilia A. “As we focus on the business units aligned with our strategic priorities, today we are announcing the decision to pursue options to divest Roctavian and remove it from…
I have a friend from middle school who has a special place in my heart. We call each other “friends of a lifetime.” Years can pass without us speaking to each other, but we pick up as if no time has passed at all. I am part of her family…