In August 2016, Luke Rosen’s two-year old daughter, Susannah, was diagnosed with a rare, neurodegenerative disease called KIF1A Associated Neurological Disorder. At the time, she was one of only about 15 people known to have the condition. Ahead of the upcoming RARE Patient Advocacy Symposium hosted Saturday, May 19 by Global Genes, in partnership with the Penn Medicine Orphan Disease Center at the University of Pennsylvania’s Perelman School of Medicine, we spoke to Rosen about his journey as a patient advocate, how he has sought to build an organization to advance research into his daughter’s condition, and his work now as a patient advocate within a biotech company.