Scarcity mindset is the belief that something you rely on will one day run out. It’s most often talked about in the context of money, which resonates with me deeply. As a neurodivergent person married to someone with hemophilia, money has always felt like one of my shields…

I wasn’t doing anything unusual when it happened. I wasn’t exercising, rushing around, or kicking someone. I was simply walking around my house when I felt a sudden, sharp pain in the ball of my foot. Within seconds, it began to swell. A bruise appeared, purple, unmistakable, and completely uninvited.

BioMarin Pharmaceutical Inc. and Believe Limited have announced the students chosen to participate in the theatrical production of “Hemophilia: The Musical,” a program that aims to empower the bleeding community through performance while raising public awareness of the connection between arts and wellness. The 25 high school students hail from…

The U.S. Patent and Trademark Office has granted uniQure a third patent covering the formulation and use of the company’s factor IX Padua gene therapy for the treatment of hemophilia and other bleeding disorders. The new patent (10,465,180) will broaden uniQure’s exclusivity rights over the FIX-Padua encoding gene,…

Stephanie was my foster child in the ’90s. She was the cutest little girl on the planet. With curly, bright-red hair and freckles, she had a charisma and charm that were hard to ignore. Stephanie was born with HIV, the virus that causes AIDS. She developed full-blown AIDS when she…

Bayer has awarded a combined $2 million in hemophilia research and patient-care grants to 16 scientists and doctors from eight countries. Four of the winners are from the United States. Three represent the Children’s Hospital of Philadelphia and one the Uniformed Services University of the Health Sciences in…

Funding has been set for the RESET-HA Phase 3 clinical trial evaluating Tremeau Pharmaceuticals‘ TRM-201 (rofecoxib) in people with hemophilic arthropathy — a painful and degenerative disease caused by recurrent bleeding in the joints. The private investment firm Gurnet Point Capital also will support other aspects of TRM-201‘s…

When my oldest son was diagnosed with severe hemophilia in 1996, I learned that mostly men have the disease. Rarely did I hear of a woman with hemophilia. The terms symptomatic and asymptomatic were used to classify women who were carriers. If the mother of a child with…

Most people with hemophilia A or B who switched from an approved prophylactic (preventive) therapy regimen to once-monthly treatment with fitusiran in the ATLAS-PPX clinical trial had no bleeds over seven months on the investigational therapy, new data show. Fitusiran also reduced bleeding rates regardless of the presence…

Researchers from the PharmedOut project at Georgetown University Medical Center analyzed how pharmaceuticals market directly to people with hemophilia and found that, while strategies are effective, further regulation and studies are necessary. The study, “Direct-to-consumer Marketing to People with Hemophilia,” was published in the PLOS Medicine Policy Forum.  PharmedOut involves doctors,…