Episode 3 — Back to School: Rare Diseases, Accommodations & Finding Your Voice

Back-to-school season brings excitement for some—but for students living with rare diseases, it often comes with a unique set of challenges. In this episode of Rare & Real, Nate Milam II and co-host Carter Hemion open up about their deeply personal experiences navigating school while living with chronic illness, late diagnoses, and disabilities.

From 504 plans and bathroom passes to missed classes, misdiagnoses, and self-advocacy, we unpack what it’s like to balance learning, health, and identity in a system that isn’t always built for us. We also reflect on the resilience it takes to fight for accommodations, the exhaustion that comes with managing your health while trying to fit in, and why conversations about accessibility in education are long overdue.

Whether you’re a rare disease patient, parent, educator, or advocate, this episode sheds light on the untold stories behind school hallways and highlights why every student deserves the chance to succeed—without having to fight for it.

Listen now and join the conversation about how we can create more inclusive, supportive environments for rare disease patients in education.