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Ep 88 – From Patient to Advocate – A Youth Voice for Rare Disease Week
On the latest episode of Beyond the Diagnosis, we sit down with Nate — 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.