Episode 11 — “I got here because I asked for help”: coming together in rare

Rare in Common: the podcast

This episode is the third in a special series recorded live at the 7th annual Global Genes RARE Patient Advocacy Summit, the largest worldwide gathering of rare disease patients, advocates, and thought leaders. When Luke Rosen’s daughter Susannah was diagnosed with a rare, neurodegenerative disease called KIF1A-associated neurological disorder (KAND) in 2016, he quickly learned there was a lack of information and resources for families like his. His desire to be there for his family and search for a treatment for KAND prompted him to leave his acting career behind and forge a new path. Two years later, as the founder of KIF1A.org and the Associate Director of Patient Engagement at Ovid Therapeutics, Luke has learned that asking for help and creating strong connections in the rare disease community are critical for navigating the challenges that arise after diagnosis.