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The Roadmap to Rare

The Roadmap to Rare

By: CSNK2A1 Foundation Podcast
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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.

© 2026 The Roadmap to Rare Parenting & Families Relationships
Episodes
  • Episode 1: Meet Your Host, Eric

    Episode 1: Meet Your Host, Eric
    Jul 1 2026

    In the debut episode of Roadmap to Rare, host Eric Finn introduces himself and the mission of the show. Roadmap to Rare aims to shed light on the reality of navigating the rare disease journey through real stories, real challenges, and research. Eric shares his personal story of how his family discovered that his son had Okur-Chung Neurodevelopmental Syndrome (OCNDS), an ultra-rare genetic condition affecting approximately 400 people worldwide.

    Subscribe so you can stay updated for new episodes! New episodes every two weeks.

    Your ideas help shape the conversations that matter most to the rare disease community. Feel free to submit questions and topics of interest to us: https://www.csnk2a1foundation.org/roadmap-to-rare-podcast

    About the Host:

    Eric Finn is from Gillette, Wyoming and is a father, advocate, and an Early Interventionist at the Children’s Developmental Center of Campbell County and a wrestling and football coach for the Campbell County School District. Eric’s son was diagnosed with OCNDS a month before his third birthday.

    Stay Connected:

    Visit our website: https://www.csnk2a1foundation.org/

    Follow us on Instagram: @csnk2a1_foundation

    Follow us on Facebook: CSNK2A1 Foundation

    Follow us on LinkedIn: CSNK2A1 Foundation
    Show More Show Less
    19 mins
  • Trailer: Roadmap to Rare

    Trailer: Roadmap to Rare
    Apr 19 2026

    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.

    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.

    Subscribe so you can stay updated for new episodes!

    Your ideas help shape the conversations that matter most to the rare disease community. Feel free to submit us questions and topics of interest us at podcast@csnk2a1foundation.org.

    Or on our webpage https://www.csnk2a1foundation.org/roadmap-to-rare-podcast!

    Follow us on Instagram: @csnk2a1_foundation

    Follow us on Facebook: CSNK2A1 Foundation

    Follow us on LinkedIn: CSNK2A1 Foundation
    Show More Show Less
    1 min
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