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.

Episode 4: Megan Soliman | When Medicine Meets Lived Experience

Megan Soliman brings a rare dual perspective to this conversation as both a physician and a parent navigating rare disease. Her experience highlights the tension between how medicine is taught and how it is practiced when families are facing diagnoses that don’t fit neatly into standard systems of care.

In this episode, Megan reflects on the realities of medical training, including how little time is often dedicated to rare disease, and what that means for physicians trying to support families in real-world settings. We discuss the critical role of newborn screening, the importance of early diagnosis, and how families often need to actively advocate for timely access to services like early intervention.

The conversation also explores the emotional and developmental side of rare disease, particularly how language, confidence, and belief shape a child’s sense of self. The episode closes with a powerful and grounding moment as Megan’s daughter joins the conversation to share the phrase she’s been taught to live by: “I am capable.”

This episode adds an important layer to the Rare Rebels™ map, showing how systems of education, early care, and family advocacy intersect, and how change often begins when lived experience informs how medicine is practiced.

Guest: Megan Soliman — Internal medicine physician and rare disease parent whose experience navigating early diagnosis, newborn screening, and intervention exposes where medical training and systems still fail rare families, and where they can do better.

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.