Sobi and Sanofi’s philanthropic organization, Foundation S, have announced an additional donation of up to 100 million international units (IUs) of clotting factor treatment to support the World Federation of Hemophilia (WFH) Humanitarian Aid Program. This is the second renewal of the 10-year partnership that will continue…

“We are more than symptomatic carriers, we have hemophilia, too!” a large group of women shouted when I attended the first National Conference for Women with Hemophilia in November 2018. As a woman with hemophilia, I know about the struggle for legitimacy in a male-dominated disease space. What I…

Kevin Leurquin is from Green Bay, Wisconsin. He enjoys spotlighting positivity through his food truck, Captain Quesadilla, and speaking publicly about “tapping into your inner awesome.” Kevin is passionate about helping others and being adventurous. He stays active by working out, golfing, trail running, and walking his dog, Summit. His…

Last weekend, our daughter graduated from kindergarten. As she proudly crossed the stage, I found myself reflecting on how far we’ve come — not just in terms of our child’s academics, but as a family living with hemophilia. As she received her diploma and later danced through musical numbers…

On April 1, the U.S. Department of Health and Human Services (HHS) announced a restructuring that effectively eliminated the Division of Blood Disorders and Public Health Genomics at the Centers for Disease Control and Prevention (CDC). For many, this news went unnoticed. But for those of us in the…

Last night, my youngest son, Caeleb, and I talked about our unique experiences with Easter egg hunts. My boy is now a 19-year-old man who is finishing his first year at the University of New Mexico. He enjoys studying cinematography and graphic design and hopes to find an internship in…

Note: All four U.S.-based columnists for Hemophilia News Today collaborated on this column. While readers may see individual columns on these issues in the days to come, these writers felt it was important to share their collective voice to highlight the impact of recent changes at the U.S. Centers for…

Over the weekend of April 4-6, I had the privilege of attending the National Outreach for von Willebrand (NOW) Conference in Phoenix. Hosted by Arizona Bleeding Disorders and sponsored by CSL Behring, the event brought together people affected by von Willebrand disease (VWD) from across the country to…

I took my youngest son, Caeleb, to the train station near our home this morning. He rides from our little town to downtown Albuquerque, about 30 miles from our house, to the University of New Mexico campus, where he’s a student. He has hemophilia and chooses not to drive.

I have vivid memories of visiting Grandma Jala. She lived in the little wooden house where she raised my dad and his three brothers after Grandpa died at a young age. The tiny house, worn by time, stories, joy, and sorrow, had a huge, adventure-filled yard. It had the flicker…