Roadmap to Rare Podcast

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.

What You'll Hear on the Podcast

A black-and-white icon of a DNA double helix centered inside a stylized circular frame.

Real conversations with families navigating rare disease

A magnifying glass and a microscope superimposed over documents, representing research, analysis, or scientific study.

Insights from researchers and clinicians working to advance science

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Honest discussions about challenges, advocacy, and progress

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Stories of resilience, connection, and hope

Whether you are a parent, caregiver, clinician, researcher, or advocate, Roadmap to Rare offers meaningful perspectives and a shared sense of purpose.

Have a Question or Topic Suggestion?

Have a question or a topic you'd like featured on the podcast? Fill out this form or send us an email at podcast@csnk2a1foundation.org or Eric@csnk2a1foundation.org.


Your ideas help shape the conversations that matter most to the rare disease community.