The Roadmap to Rare

This is the Roadmap to Rare. Hosted by OCNDS parent Eric Finn, this podcast explores the reality of the rare-disease journey—sharing hope through real stories, real challenges, and research. This is our rare disease roadmap.

Every rare disease journey is different, but no family should have to navigate it alone.

On Roadmap to Rare, Eric sits down with parents, advocates, clinicians, researchers, and leaders in the rare disease community to talk about what the path really looks like—from diagnosis to advocacy, research breakthroughs, and everything in between.

Together, these conversations shine a light on the experiences that unite the rare disease community: resilience, determination, and hope for the future.

Host

Eric Finn

Eric Finn is a Parent Advisory Board Member of the CSNK2A1 Foundation and dad to Ronin, who was diagnosed with Okur-Chung Neurodevelopmental Syndrome (OCNDS) just before his third birthday.

He lives in Gillette, Wyoming, with his wife, Miranda. After navigating his son’s diagnosis, Eric made a career change inspired by the professionals who supported their family. Today, he works as an Early Interventionist helping children and families facing similar challenges.

Eric also coaches wrestling and football for the Campbell County School District. He brings both lived experience and professional insight to this podcast, with a focus on honest conversations and helping families feel less alone.