Episode 088 - From Patient to Advocate – A Youth Voice for Rare Disease Week 2026

Welcome to Episode 088 of the Beyond the Diagnosis Podcast. During Rare Disease Week 2026, we’re shining a spotlight on something that moves our community forward in powerful ways: advocacy. On this episode we sit down with Nate Saelinger — a Histiocytosis Youth Ambassador, high school sophomore, and passionate advocate — who went to Capitol Hill to participate in Rare Disease Week with the EveryLife Foundation for Rare Diseases. Diagnosed with Langerhans Cell Histiocytosis as a child and continuing to manage diabetes insipidus, Nate is using his voice to help shape conversations around research funding, policy, access to medication and the future of rare disease care. His story is a powerful reminder that advocacy has no age limit — and that sharing lived experience can drive real change. Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].   Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!  Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.   Resources mentioned in the podcast: Rare Disease Week with Every Life Foundation Follow the Histiocytosis Association on social media: Facebook: https://www.facebook.com/histio Twitter: @histiocytosis Instagram: histiocytosis_association YouTube: https://www.youtube.com/@Histiocytosis  Music: “Heroes” by Noah Smith