Episode 1: Pilot-We’re Here, We’re Queer, We’re Rare

*There are about 300 MILLION people impacted by rare disease globally, not 300!*

Welcome to the very first episode of Rare & Real, where we bring the bold truth of queerness and rare disease into the light—unapologetically.

In this premiere, your hosts Nate Milam II and Carter Hemion introduce you to the heart of Rare & Real and the movement behind it: Stripes of Solidarity. Together, they open up about their personal journeys with rare disease—Hemophagocytic Lymphohistiocytosis (HLH) and classical Ehlers-Danlos syndrome (EDS)—and how those experiences shaped their identities, advocacy, and why this platform exists.

They dive into:

• What a rare disease actually is—and why most have no treatment

• The isolation and misdiagnosis that come with being rare

• What it means to be queer and a patient navigating healthcare systems that weren’t built with you in mind

• The importance of safe, intersectional spaces in advocacy

• Why Stripes of Solidarity is a call to action

You’ll also hear reflections on Pride, imposter syndrome in the advocacy space, and how even joy can coexist with pain in the lives of rare disease patients.

Whether you’re queer, rare, both, or a caring ally—this is your invitation to belong, to listen deeply, and to help us change the narrative.

Join the movement. We see you. We’re with you. Happy Pride.

Instagram: @_rareandreal

LinkedIn, Facebook, & YouTube: Stripes of Solidarity

www.stripesofsolidarity.org