A partnership between Emmes and MedGenome seeks to accelerate development of genomics-powered therapies for people with rare diseases, such as hemophilia. The companies plan to combine patient data into custom disease registries to improve research design and help with patient recruitment for clinical trials. In addition, they…

As I slowly approach the big three-zero (two more years to go!), I can’t help but reflect on the state of my health. Physical symptoms scare me now more than ever, and I want them checked as soon as possible. I’ve been trying to commit to healthier habits as well…

I cut my thumb above my knuckle a few weeks ago. It didn’t seem like a big deal, but five Band-Aids later, I began to wonder. A few hours later, I noticed my knuckle was swollen, painful, and a bit blue. My thumb wouldn’t bend, and the swelling extended down…

Advocacy is a beautiful thing. Many people find it fulfilling because it’s a way to show kindness to others while championing something close to one’s own heart. But advocacy isn’t always easy. I’ve come across some disability advocates whose dedication to the cause was tested by their experiences…

We live in a world that is loud and overwhelms us at every turn. The noise can drown out our own ability to think, leaving us frightened and unsure what our next step should be. Because I have been a caregiver to two sons with hemophilia and have to deal…

I am an advocate, born and bred. Being an advocate is simply part of my DNA. Even when I was a young girl, seeing someone be mistreated or experience prejudice angered me. The years have taught me how to fight my battles and fight for others, but when my first…

Mistakes can be costly. The damage of a single mistake can cost a few dollars or an entire livelihood. In an ideal world, we’d learn our lessons before we had the chance to make any mistakes. That way, we could avoid ever making them. It’s like going to school,…

Jim Christensen Jr., a hemophilia A patient who has supported the National Hemophilia Foundation (NHF) for more than three decades, has received the Lester A. Rosen Humanitarian and Achievement Award, given annually by Ameritas, for which he is an independent financial representative. With the award, the insurance company…

Chronic pain and a reliance on pain killers remains high among adult men with severe hemophilia B after two years on preventive treatment with extended half-life recombinant factor IX — even with a lesser bleeding frequency and fewer repeated joint bleeds, a real-world study from Ireland reports. These findings…

Many years ago, when my youngest son was 11 months old, he was hospitalized during the Christmas season due to hemophilia complications. We enjoyed the different community groups, such as performing arts groups, school groups, and church ministries, that came to share a tiny part of the holidays with…