Episode 6: Wes Michael | Building the Infrastructure for Patient Voice

Wes Michael brings a systems-level perspective to the rare disease ecosystem through his work as the founder of Rare Patient Voice. With a background in market research, Wes recognized early on that healthcare organizations lacked ethical and effective ways to listen to patients, especially those navigating rare and complex conditions.

In this episode, Wes shares how Rare Patient Voice was created to connect researchers, companies, and institutions with patients and caregivers in ways that respect their time, compensate their expertise, and avoid exploitation. We discuss why patient voice must be built into research and development early, how compensation changes power dynamics, and what happens when listening becomes a foundational part of decision-making rather than an afterthought.

This conversation adds an important infrastructure layer to the Rare Rebels™ map, showing how patient voice moves through systems, how it becomes usable, and why ethical listening is essential to progress across rare disease research, trials, and care.

Guest: Wes Michael — Founder of Rare Patient Voice, creating ethical, scalable infrastructure that enables patients and caregivers to share their experiences and shape research, development, and healthcare decisions.

About Rare Rebels™ Rare Rebels™ is an ongoing effort to map the rare disease ecosystem through the people leading the charge, documenting how change happens and how connections across science, advocacy, infrastructure, and lived experience shape what becomes possible.