On Christmas Day, Chris Bombardier, a man suffering from hemophilia B, traveled to Antarctica. While most of the people that go there scientists, Chris has a completely different goal in…
Irish drugmaker, Shire, announced earlier this month it will bring new genetic disorder drugs to India, stepping up its worldwide presence. Shire is unique in that it's one of the…
Pharmaceutical company and gene therapy leader, uniQure, published promising data from their current phase I/II trial testing out a gene therapy called AMT-060 in patients with serious cases of hemophilia B.…
Big news for those with hemophilia! On Thursday, the FDA approved Hemlibra (manufactured by Genentech), a weekly self-injection for hemophilia A patients who have developed resistance to standard medicines for preventing…
Did Wellmark Blue Cross and Blue Shield cross the line? Leading hemophilia groups, National Hemophilia Foundation (NHF), Hemophilia Federation of America (HFA), and Hemophilia of Iowa (HOI) believe that they…
Most people are familiar with the old adage, “The squeaky wheel gets the grease.” My grandmother used to go a bit further by pointing out, “But the greased wheel that…
The Indiana Hemophilia & Thrombosis Center in Indianapolis has long been a leader in innovative patient care. They teamed up with MicroHealth, a company founded by hemophilia patient Aaron Craig…
Patient Worthy attended the National Hemophilia Foundation's 69th Annual meeting in Chicago and we are thrilled to report on some of the exciting new developments for patients with bleeding disorders.…
My 4-year-old son went through a phase a few years ago where he had to clarify everything he said. “Momma, that car was blue. It wasn’t green. It was blue.”…
Hema Biologics have recently released something even cooler and more inventive than just their traditional hemophilia treatments. They are way on top of their game and know exactly how to…
Your hear that? It's the sound of the future knocking on the door! The MIT Technology Review reports about the first-known experiment to edit human embryos in the United States using a…
BioMarin just announced interim results from a continuing Phase 1/2 study for hemophilia A patients, testing a gene therapy known as BMN 270. Hemophilia A is a rare bleeding disease…
Maybe you’re someone like me who didn’t know what a Hemophilia Treatment Center is or what it does. I never thought about treatment centers of any type, of course, there…
Bleeding is painful. It's not only painful, but probably worse, it's also just a nuisance and a hassle. Lucky for most of us, pressure, a bandaid, or, at worst, a…
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In September, 2015, the U.S. FDA approved NUWIQ®, a recombinant antihemophilic factor (protein essential for normal blood clothing) developed by Octapharma AG, for the treatment of hemophilia A in children…
The Susan Skinner Memorial Fund (SSMF) Scholarship was created to help foster the education of the newest generation of bleeding disorder advocates and researchers. Two scholarships are being offered this…
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