Heritage Biologics recently had the opportunity to support an important venue for rare disease patients called DISORDER: The Rare Disease Film Festival. This event takes place on October 2nd & 3rd in Boston and will feature over 30 films from around the world. Learning, sharing, and celebrating the rare disease patient experience is important to advancing the science for these disorders. We were fortunate to connect with Daniel DeFabio and learn about his inspiring story as a father of a rare disease patient.
My name is Mike and I have a genetic mutation disorder called Hemophilia. Unfortunately, I didn’t gain any super natural powers like X-men. I may not be able to blast laser beams out of my eyes or have metal alloy claws bolt out of my hands, but this mutant was gifted a power unlike any X-men. I have the power of voice. I am an Advocate. I am a Patient Experience Navigator!