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.
The Roadmap to Rare
Latest Episodes
Episode 8: Five Practical Ways for Families to Prepare for Clinical Trials ft. Dr. Gabrielle Rushing
In Episode 8 of Roadmap to Rare, host Eric Finn is joined by Dr. Gabrielle Rushing, Chief Scientific Officer of the CSNK2A1 Foundation, to talk about one of the biggest questions that rare disease families may ask: will there ever be a...
Episode 7: Reflecting on Rare Disease Week ft. Alyssa Ronco & Jessica Wilfong
In Episode 7 of Roadmap to Rare, host Eric Finn sits down with two fellow OCNDS parents, Alyssa Ronco and Jessica Wilfong, to talk about their experience at Rare Disease Week in Washington, DC. This three-day event, run by the EveryLif...
Episode 6: Going the Distance for OCNDS Awareness ft. Kevin Pilgrim
In Episode 6 of Roadmap to Rare, host Eric Finn is joined by Kevin Pilgrim, an OCNDS parent from the UK. Kevin’s son, Hunter, was diagnosed with OCNDS in 2021. Kevin shares his family’s road to a diagnosis, the relief of findi...
Episode 5: The Road to the CSNK2A1 Foundation ft. Jennifer Sills
In Episode 5 of Roadmap to Rare, host Eric Finn is joined by Jennifer Sills, Founder and President of the CSNK2A1 Foundation, which supports families affected by Okur-Chung Neurodevelopmental Syndrome (OCNDS). Jennifer shares ...
Episode 4: Chatting with a Genetic Counselor ft. Grace Branger, MGC
In Episode 4 of Roadmap to Rare, Eric Finn is joined by Grace Branger, MGC, a genetic counselor who helps families navigate genetic testing and rare disease diagnoses. Grace discusses the basis of genetic testing, explains how to make ...
