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.

Episode 5: Jennifer Siedman | Making Space for Care, Grief, and Hope

Jennifer Siedman brings a steady, thoughtful presence to conversations that many families struggle to name. As a parent and leader at Courageous Parents Network, her work focuses on helping families navigate serious illness with clarity, compassion, and support, especially when there are no easy answers.

In this episode, Jennifer reflects on how her personal journey informs the topics Courageous Parents Network engages with, including different types of grief, the evolving meaning of hope, and the emotional complexity of decision-making in medical care. We talk about how families live with uncertainty over time, and why support must extend beyond moments of diagnosis or crisis.

This conversation adds an important layer to the Rare Rebels™ map by centering care that is relational, ongoing, and deeply human. It highlights the role of guidance, language, and presence in helping families feel less alone as they navigate medical complexity and the long middle spaces of rare disease.

Guest: Jennifer Siedman — Parent and nonprofit leader at Courageous Parents Network, equipping families of medically complex children with language, guidance, and support to navigate care, grief, and decision-making.

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, and lived experience shape what becomes possible.