Why I Call Our Community ‘The Herd’: The Power of Connection

What started as a slight health hiccup spiraled into a journey I never saw coming. A rare disease diagnosis turned my life upside down, forcing me to reevaluate every part of my world. In the blink of an eye, I went from living as the “old me” to grappling with a new reality filled with limitations, uncertainties, and an ongoing fight to adapt.

I still can’t wrap my head around how you can wake up one day sick—and never get better. It’s a truth that remains unfathomable, even six years later. But what hit me hardest wasn’t just the physical challenges of my diagnosis. It was the emotional toll. The grief of who I once was. The isolation. The invisibility.

Living with a rare disease doesn’t just impact your body; it weaves a complex emotional web that’s hard to untangle. Yet, amid all that, I found something extraordinary: the power of community.

Why the Zebra?

The zebra symbolizes rare disease awareness. At first glance, the connection might not be obvious, but it’s profound. In medical school, doctors are taught: “When you hear hoofbeats, think horses, not zebras.” It’s a reminder to focus on common diagnoses first.

For those of us living with rare diseases, we are the zebras. We are the rare diagnoses that aren’t considered first—or even second or third.

What makes zebras even more remarkable is their individuality. No two zebras have the same stripes, just as no two rare disease journeys are alike. Our differences make us unique. But here’s the twist: while zebras are independent creatures, they know there’s strength in numbers. They form herds to protect one another because there’s safety in the community.

This beautiful duality—distinct yet deeply connected—is why the zebra is so meaningful to the rare disease community.

Introducing the RARE. Herd

When I launched RARE. in 2019, I knew community had to be at its heart. The loneliness I felt after my diagnosis wasn’t just painful—it was suffocating. I didn’t want anyone else to feel like they were navigating the complexities of a rare disease alone.

So, I set out to create a space where people could feel seen, supported, and celebrated.

The name “RARE. Herd” came from this vision. It’s a nod to zebras traveling in herds and to our shared mission of being “heard” in a world that often overlooks us.

At the heart of the community is the fundamental principle of showing up, standing up, and speaking up. This creates a supportive environment that allows each of us to be ourselves, regardless of our circumstances. It provides the space and comfort of a support system where you can come as you are.

The Strength of the Herd

Being part of this community has shown me something remarkable: the power of collective voices. Individually, our experiences might feel small or unheard. But together? We amplify each other’s stories, creating a movement that demands attention. This community is such a force. It’s proof that while rare diseases may affect individuals, our collective strength can change the narrative and impact the way rare diseases and other invisible struggles are perceived.

What makes our herd truly special is:

• We celebrate individuality. Just like zebras, no two of us are the same. Our unique experiences are our superpowers.

• We embrace connection. Isolation is a heavy burden, but no one walks alone in the herd. We stand shoulder to shoulder, supporting one another through every challenge.

• We advocate for change. Our voices, united, are louder than ever. We fight for greater awareness, research, and support—not just for ourselves but for the millions of others living with rare diseases.

The RARE. The herd is more than a group of people; it’s a testament to the resilience, empathy, and strength of the community.

What the Herd Means to Me

If you asked me seven years ago how I got through the most challenging moments, I’d have one answer: community—the RARE. Herd has been my lifeline. It’s where I’ve found understanding, connection, and purpose.

When I think about the thousands of people who’ve joined this journey, I’m overwhelmed with gratitude. This isn’t just about me or my story—it’s about all of us—every voice in the RARE. Herd matters. Together, we’re making the invisible visible.

Turning awareness into action

Rare diseases aren’t as rare as you might think—1 in 10 Americans live with one. Yet, so many of us feel invisible, overlooked, and unsupported. That’s why the RARE. Herd exists to ensure no one faces this journey alone.

If you’re living with a rare disease, supporting someone who is or wants to make a difference, I invite you to join us. Together, we can raise awareness, advocate for change, and build a future where every rare voice is heard.

To My Herd

Thank you for your trust, love, and unwavering supporet. You are the reason I keep going. Let’s keep making noise because the world needs to hear us.

Join the RARE. Herd today. Let’s be heard. Together.

#MakingTheInvisibleVisible | #RAREHerd | #LiveLargeAndStayRARE