BioMarin provides update to ongoing Phase 3 hemophilia A gene therapy study

An update for the hemophilia community from BioMarin, regarding the ongoing Phase 3 BioMarin hemophilia A gene therapy study, and a serious adverse event deemed, by the Independent Data Safety Monitoring Committee, unrelated to the investigational gene therapy from the phase 1/2 study. View the original Clinical Development Program Update BioMarin’s investigational gene therapy for […]

Women Power

family in front of tree

Traditionally, women often wait years for a proper bleeding disorders diagnosis. But more awareness, advocacy and treatments are improving things now and for future generations.  By Risa Kerslake, Freelance WriterKristin Voyles didn’t know growing up that she had von Willebrand disease (VWD). Looking back though, it made sense. She bruised easily and had heavy periods. […]

The Legacy of HTCs

Hemophilia treatment centers have been around for almost 50 years. Learn about their history, successes, and new challenges.  By Rebecca A. Clay At 58, Michael Birmingham, of Tacoma, Washington, is old enough to remember what life was like for kids with bleeding disorders before the advent of hemophilia treatment centers (HTCs). Diagnosed with severe hemophilia […]

Career Dreams

New HFA Job Readiness Grants help community members reach their career goals and improve their lives. By Allison Harrison, MSW, Associate Director of Services  Have you ever felt stuck in your career with low pay, limited opportunities that fit your needs or lack of advancement potential? You’re not alone. “Between my physical health and the […]

Fore the Love of the Game

Hogan Lust has become a teenage standout in one-arm golf association tournaments By Melanie Padgett Powers, Managing EditorHogan Lust, age 16, of Tucson, Arizona, has been playing golf since he was a toddler. His parents, Daniel and Corby, are golfers too, so it was only natural their oldest child would play the sport. “He had a […]