CSNK2A1 Foundation Podcast

The Roadmap to Rare

Kids EN ↓ 2 episodes

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 shin...

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Author

CSNK2A1 Foundation Podcast

Episodes

Episode 1: Meet Your Host, Eric 01.07.2026 18:59

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 condit...

Trailer: Roadmap to Rare 19.04.2026 0:55

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...