Partnering with Purpose: How Lived Experience Drives Rare Disease Innovation w/ Teresa Fecteau, PhD

In this episode of MSLead Chronicles, Mary Morton and Chad Fellers sit down with rare disease Medical Affairs leader Teresa Fecteau to explore why lived experience must be more than a source of occasional feedback. It should be a consistent foundation for research, strategy, trial design, and decision-making.

Teresa explains why patients, caregivers, and families often understand the realities of rare disease long before the science or healthcare system catches up. The conversation examines the prolonged diagnostic odyssey, the practical and financial burden of care, the importance of co-creating with rare disease communities, and the role patient insights can play in identifying meaningful endpoints and uncovering what traditional clinical data may miss.

They also discuss the uniquely important role of MSLs in rare disease, including the need for deep scientific expertise, strong relationships with multidisciplinary care teams, and systems that translate field insights into meaningful action. Throughout the episode, Teresa challenges Medical Affairs teams to move beyond simply listening and ensure that lived experience actively shapes innovation and improves outcomes for patients and families.