Six Years Of Fighting, Creating, And Advocating—This Is RARE.

Six years ago, before I fully understood what was happening, my journey toward creating RARE. had already begun. I could say I navigated each stage of acceptance, found peace, and embraced my new reality, but that's not my story.

The truth is, I'm still living with a rare disease that has transformed every aspect of my life. The constant shadow of uncertainty looms large, accompanied by the frequent lack of understanding from those around me. Each day presents a new battle as I navigate a landscape filled with physical, emotional, and mental challenges. Accepting this new version of myself has become a daily struggle, often leaving me in denial about my limitations. I used to thrive on meticulous planning and a perfectly crafted to-do list. Now, however, I find myself subject to the whims of a condition so elusive that it hardly has a name. Even after six long years filled with ups and downs, I often wake up in disbelief, grappling with the reality of my journey.

Yet, amid these challenges, something powerful emerged.

Turning Pain into Purpose

As I entered the world of rare diseases, I realized I wasn't alone. So many people fight unseen battles—rare, chronic, and invisible conditions that are misunderstood, overlooked, or dismissed. But I also discovered something profound: We are all rare in our own way.

RARE started as a platform to raise awareness about rare diseases, but it has evolved into something so much more—a space to celebrate everything that makes us unique. This includes not only our diagnoses but also our invisible struggles, our mental health, our quirks, and the parts of ourselves that don't fit into society's definition of "normal."

RARE. isn't just about illness—it's about embracing all of what makes us. The misunderstood, the resilient, the unconventional, the beautiful chaos of who we are.

Creating a Lifeline: The Birth of RARE.

When words failed me, I turned to something I could control—creation. Designing products, apparel, and accessories became a lifeline, a way to say what I couldn't always put into words. These designs weren't just clothing but conversation starters, silent yet powerful declarations of identity.

From those early designs, RARE. was born—not just as a brand but as a movement to make the invisible visible.

The Strength of The Herd

By definition, a herd moves together—and that's what we've built. As I immersed myself in the rare disease community, I learned the significance of the zebra. Unlike horses, no two zebras have the same stripes, symbolizing the beauty of individuality while reinforcing the strength of unity.

Over time, The RARE. Herd became more than just a name. It became a movement. A collective of voices standing together in support, advocacy, and love for one another.

The Evolution of RARE.: Honoring Every Part of the Journey

As we celebrate our sixth year, I am incredibly proud of how RARE. has evolved—not just as a brand but as a movement that reflects the many ways we navigate our unique journeys. Over the years, we've expanded our mission to include a few incredible initiatives: RARE. Elements, Local by RARE., and Create with RARE. These projects highlight a distinct part of what makes us beautifully rare and honor our different paths toward healing, self-expression, and connection.

- RARE. Elements is all about honoring your personal journey—not just the physical healing but also the emotional and mental strength that comes with it. Every piece is designed to reflect who you are, what you've been through, and the story you want to tell.

- Local by RARE. is a community-focused initiative that showcases the essence of your hometowns, favorite cities, or any place that's meaningful to you. Whether it's the city that raised you or the spot where you really found yourself, Local celebrates our deep connections with the places that shape us.

- Create with RARE. is where your vision comes to life. It's more than just custom design; it's about sharing the healing power of creating, which has impacted my life. When I couldn't find the right words, creating gave me a way to express myself. Create with RARE. turn your story into something tangible, meaningful, and impactful, bringing your vision to life for all the big and small events.

RARE. has always been about more than just what makes us sick—it's about what makes us us. These initiatives represent another way for me to share my journey and hopefully provide others a space to do the same.

Six Years Later: Louder, Stronger, Unstoppable

We are proof that there is strength in numbers. What started as a single voice—my voice—has grown into something so much bigger, and it's because of each and every one of you. Our voices are growing louder together, and we will create change.

Because RARE. is not just about rare diseases. It's about rare individuals.

It's about every person who has ever felt misunderstood, unseen, or different. It's about those fighting invisible battles, navigating mental health struggles, embracing their quirks, and redefining strength.

As we celebrate six incredible years of RARE., I want to take a moment to thank everyone who has been part of this journey! Each one of you has helped shape RARE. into what it is today. Your strength, stories, and constant support mean the world to me and keep our mission alive daily. Without you, RARE. wouldn't be what it is now.