The U.S. Food and Drug Administration (FDA) has scheduled its inspection of the facility in California where BioMarin Pharmaceutical would produce the gene therapy Roctavian (valoctocogene roxaparvovec) if it’s approved. The agency is reviewing a biologics license application (BLA) from BioMarin that seeks approval of Roctavian to…

As a pastor, I often greet parishioners at the church door. I want to share meaningful words of assurance, but unfortunately, I must move from one person to the next in a quick, almost rapid-fire progression to avoid holding up the line. In-depth conversations, which I dearly love, must wait…

My adult son is 22 and living at home. He will be moving to a neighboring city next month and will go back to college in the fall. He was recently hired at a coffee shop and has been commuting the 90 miles one way about four days…

Bleeding disorders affect everyone, male or female, no matter how old you are or where you are in the world. If left untreated, bleeding disorders can lead to serious consequences, and may even cause death. Bleeding disorder patients in developing countries do not have any support from their governments in regards to necessary care. In fact, they may not even get help when it comes to being diagnosed. Unfortunately, these conditions often affect children, who needlessly suffer through all the awful symptoms of a bleeding disorder,…

As a woman of faith, I look for God in various places. I experience God in a beautiful sunset, a phone call from a dear friend, or even in the middle of a struggle. Walking a labyrinth is one of my favorite places to connect with God. A labyrinth…

Dear pharmaceutical companies,  I am speaking to every one of you who makes a factor replacement product for hemophilia.  Thank you for developing more options and safer products for our community. Because of your research, we have products that greatly improve our lives. We…

As I write this, I’m battling my first major cough and cold since the COVID-19 pandemic started. Regular mask-wearing seems to have lowered our chances of getting sick, which is good. But now I’m no longer used to feeling ill. At the same time, my husband, Jared, is bedridden…

Before I share my story, I must make a disclaimer. The pastor/counselor side of me cannot continue without acknowledging that my story is not everyone else’s story. Some people in the bleeding disorders community do not have the support that many of us appreciate. I can’t believe how…

When people talk about hemophilia, some deliberately avoid calling it a disability. Instead, they’ll say “a medical condition” or “a health challenge,” as if disability were a negative label. Some who embrace the positive thinking movement even argue that people with hemophilia shouldn’t see it as a disability, pushing…

Changes are happening in the bleeding disorder community like I never imagined. New product after new product has hit the marketplace, each one claiming to be the best available. They all have great claims, with less infusing being the No. 1 draw. But how do you know if…