In a recent conversation with my husband, Jared, he dropped a bombshell. If he were given the chance to be rid of hemophilia entirely for the rest of his life, he said he’d hesitate to take it. He’d actually miss his current life with severe hemophilia B. My…

Two longtime bleeding disorders advocates, who are the parents of a son with hemophilia B, have made a founding donation to Pathway to Cures — dubbed P2C — the new venture philanthropy fund of the National Bleeding Disorders Foundation (NBDF). The transformational gift was added to the estate…

Shire has launched a Phase 3 clinical trial (NCT02585960) with Adynovate, a drug approved to help treat and control bleeding in children and adults with hemophilia A. The trial is currently recruiting participants. Adynovate is an injectable recombinant factor VIII (FVIII), designed using pegylation technology, which allows it to last…

Trio Health has launched a novel database with real-time clinical data of patients with hemophilia which combines information from medical doctors and pharmacies. The main aim of the database is to provide information on the treatment regimen to physicians in order to improve patients’ outcomes. Access to the database…

I’m grieving for my youngest son, Caeleb, a high school senior. Caeleb’s academic pursuits haven’t been successful, according to the world. Society revels in straight A’s, being in the top 10% of a graduating class, and receiving full-ride scholarships to college. If a student isn’t meeting these expectations and doesn’t…

When someone we love is diagnosed with a chronic illness, our instincts often compel us to search for solutions: stricter routines, healthier diets, more discipline, or the willpower to push through. While self-help culture tends to praise these strategies, our family’s experience with chronic illness has shown that they can…

The European Medicines Agency (EMA) is considering lowering the minimum number of patients required in clinical trials of potential hemophilia treatments because of “dramatic” increases in hemophilia research and concerns about the availability of patients for rare diseases like hemophilia A. “EMA began the process after becoming concerned that the minimum…

The National Hemophilia Foundation (NHF) and Impact Education, LLC (IMPACT) have jointly announced the fourth annual National Hemophilia Foundation Annual Meeting pre-conference symposium has been specifically designed for pharmacists — including specialty, home health, health plan, and managed Medicaid pharmacists — as well as for medical directors and other…

The European Commission will award the Brussels-based HemAcure Consortium €5.6 million in next-stage funding of a therapy called Cell Pouch —  developed in collaboration with Canada’s Sernova — for hemophilia A patients. The therapy delivers corrected factor VIII with the help of cells that sit in a transplanted pouch under the skin. The cell pouch…

The U.S. Food and Drug Administration (FDA) has cleared clinical testing in adults of BE-101, a B-cell treatment candidate for hemophilia B being developed by Be Biopharma. The Phase 1/2 trial, called BeCoMe-9, will be a first-in-human study designed to assess the safety and preliminary efficacy of BE-101…