Significant disparities in access to hemophilia treatment exist around the world. In general, people with hemophilia can live a relatively normal life if their condition is properly managed and they have access to appropriate medical care. However, in developing countries, access to adequate treatment and medical care can…
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In the marketing world, we have a concept called the elevator pitch. An elevator pitch is a short, persuasive speech delivered in the time it takes to ride an elevator, hence the name. The goal of an elevator pitch is to quickly and effectively communicate a person’s ideas, product, or…
To help people understand the science behind hemophilia and other bleeding disorders, digital content agency Believe Limited will present its first science fair this fall. Sponsored by commercial gene therapy company Spark Therapeutics, the science fair will be held at the National Hemophilia Foundation’s 71st Bleeding Disorders Conference…
My oldest son, Julian, is preparing for a big audition. He hopes the casting director will hear his submission and ask him to go to New York for a final, on-site callback. If the powers that be select him, he’ll perform in his first national touring production. My son displayed…
Preliminary results of a Phase 1/2a trial of the hemophilia A experimental treatment BIVV001 show a significant extension of replacement therapy lifetime in the blood, Bioverativ announced. The ongoing, and still recruiting, open-label, multicenter EXTEN-A study (NCT03205163) is evaluating the safety, tolerability, and pharmacokinetics of a single intravenous injection…
Planning a pregnancy with hemophilia can bring up a lot of questions. While many pregnant women with the condition don’t experience major complications, careful planning and comprehensive care are needed to ensure the best outcomes for you and your baby. Learning about hemophilia and pregnancy, including…
Julian MacDonald opens up about life with severe hemophilia A, from early diagnosis to the financial and insurance challenges he faced in adulthood. He shares how leaning on pharmacists, care teams, and the broader hemophilia community became essential to understanding he didn’t have…
In addition to its clinical challenges, hemophilia is characterized by a major economic burden that affects patients, care givers, the healthcare system and society. In a recent report, Sheh-Li Chen, PharmD, from the University of North Carolina Medical Center, identifies the most significant areas of healthcare hemophilia management, highlighting the importance of the…
Scientists have developed advanced liver organoids — lab-grown “mini-organs” that mimic the function of organs in the body — that are capable of growing their own functional blood vessels and producing clotting factors that could eventually be used to treat hemophilia, according to a study. In a mouse model…
Intimacy. Warmth. Comfort. Security. Closeness. These are things that many of us yearn for in relationships. However, when someone has a bleeding disorder, relationships can also be associated with other things, like fear, pain, embarrassment, and shame. Sexuality is hard to discuss,…