In this episode of Rare on Air, host Julien Poulain speaks with Nick Sireau, CEO of the AKU Society and father to two sons living with alkaptonuria. Nick shares how his son’s unexpected diagnosis led him to become a leading advocate for rare diseases and a pioneer in drug repurposing.

Nick recounts how a molecule once destined to be a weedkiller became a treatment for AKU, and reflects on the broader promise and challenges of repurposing approved therapies for different rare conditions.

Join the conversation using #EurordisRareOnAir or contact the podcast at RareOnAir@eurordis.org.