Grifols is expanding its commitment to the World Federation of Hemophilia (WFH) Humanitarian Aid Program, donating at least 240 million international units (IU) of blood clotting factors over eight years to consistently treat some 3,000 bleeding disorder patients in developing countries. The contribution, starting in 2022 and running through…

As a caregiver, hope exists in practically my every waking thought. I wish for things to improve regarding my loved ones’ treatment. Hope keeps me going so that I may provide the best care possible for them. Four simple letters put together in the proper order set my heart and…

I have guaranteed quality time with my youngest son, Caeleb, who is 15 and has hemophilia, every Sunday morning. He comes with me to the church where I serve as pastor, and he video records the service each week. Our commute is 40 minutes one way, and in that time…

I recently scheduled a consultation with a psychiatrist after years of trying to manage my mental health without professional help. Since I was a teenager, I’ve dealt with chronic mental health issues that manifested in bothersome ways. In the past, I had difficulty sleeping, disordered eating, and fluctuating moods. I…

This time of year reminds me of hope and the promise of new beginnings. In the spring of 2014, when my son “MacDonald the Younger” was 8, his life drastically changed. Along with our talented hematologist, Dr. Winter, we mapped a treatment plan that proved successful for my young, stinky…

Though the school year is nearly over for my youngest son, Caeleb, who is 15, he just returned to in-person learning for the first time since the pandemic began. Caeleb, who has hemophilia, is a high school freshman and a new student to the school district this…

Continuous into-the-vein (intravenous) infusions of Advate immediately before and after major orthopedic surgery is as safe and effective as standard, short, bolus infusions at preventing bleeds in men with moderate-to-severe hemophilia A. That finding from a Phase 3/4 clinical trial — the first controlled trial to compare the two types…

I recently celebrated my 27th birthday in the company of family. Despite being unable to go out due to government-mandated COVID-19 restrictions, I still had a wonderful celebration at home. Although it was a weekday, our workload that day wasn’t too heavy or stressful. I was able to do enjoyable…

I cannot believe that Easter is a few days away. I keep asking myself, “Didn’t we celebrate New Year’s Day yesterday?” One of the common themes interwoven into the fabric of what Christians call Holy Week is the idea that before we get to the joy of Easter, we…

As anyone affected by a rare disease knows, treating the illness while trying to go about everyday life is an expensive undertaking.  But exactly how expensive — in terms of direct and indirect costs across rare disease populations — might still come as a surprise: almost…