Understanding the real-life experiences of individuals and families affected by Niemann-Pick Disease Type C (NPC) is essential to improving care, research, and future treatment development. A new research initiative led by Janney Wang from the University of Sydney is aiming to do exactly that—by listening directly to the voices of people living with NPC, their carers, and their families. This work focuses on capturing the everyday realities of living with NPC, including: The