Our goal is to provide a place where patients and parents can express their lived experience to provide hope and guidance to others. Our guests’ experiences vary widely and do not necessarily reflect the views and opinions of Salem Oaks or Raising Rare. 

Patrick Girondi is an author, songwriter, singer, founder of gene therapy company, but most importantly a father. He started his adult life as a high school dropout, joined the US Air force, worked on the docks, joined board of trade, and has now become a founder and CEO.  His son has a rare disease called beta-thalassemia. Patrick moved to Italy for his son’s treatment, a moved that allowed the money that was going to be needed for experimental treatment to instead be used for a treatment center. 

In the small town in Southern Italy where Patrick now lives, there is a bird that cannot take flight on its own, it requires the help of a tall building or a passerby throwing it as high in the air as it can for it to keep going. Like many rare families, and the rondone, Patrick has had the help of many people along his journey that have given him (and his son) a second chance and have allowed them to keep going.

Flight of the Rondone by Patrick Girondi