What is it like when you have to “come out” more than once—about who you love and about the rare disease that changes your life? 

Coming out isn’t just about sexuality—it can happen in every part of the journey, especially when your health or identity challenges the norm. In this episode of Rare & Real, Nate and Carter dive into the unexpected ways queer and rare disease communities share similar struggles: feeling unseen, constantly having to “explain” who you are, and fighting for care and respect.

Through personal stories and real talk, they explore what it means to come out as queer and as someone living with a rare condition, including the tough conversations with doctors, the power of self-advocacy, and the freedom that comes from owning your truth. Whether you’re part of the LGBTQIA+ community, navigating a rare disease, or simply curious about the intersection of identity and healthcare, this conversation will leave you informed, inspired, and thinking differently about what it means to truly be seen.

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