We’re excited to introduce you to the always interesting and insightful Kristine Hoestermann. We hope you’ll enjoy our conversation with Kristine below.
Kristine, appreciate you joining us today. Let’s start with the decision of whether to donate a percentage of sales to an organization or cause – we’d love to hear the backstory of how you thought through this.
Yes, 15% of every purchase made with RARE. is donated to an organization or cause—but it’s done in a way that reflects the heart of our brand. From the very beginning, I knew I wanted RARE. to be more than just a clothing brand; I wanted it to create real impact. Our mission has always been to make the invisible visible and to empower people to feel seen, supported, and valued, no matter where they are on their journey.
Initially, I planned to donate to NORD, the National Organization for Rare Disorders, since my own journey with rare and invisible illnesses inspired the creation of RARE. But just a few weeks before our launch, I realized that focusing on a single organization wasn’t fully aligned with what RARE. stands for. Our entire mission is about giving people a voice and honoring their unique experiences. I wanted to take that a step further and allow our community to decide where their 15% goes—to make their voice part of the impact we create.
That’s how Shop Your Purpose was born. When you make a purchase, you can select a cause or nonprofit that’s meaningful to you from a drop-down menu at checkout. We’ve partnered with a variety of vetted organizations, but if none of them align with your journey, you can nominate your own as long as it’s a registered 501(c)(3). For those who don’t choose, the donation is split evenly among all the listed organizations, ensuring every purchase still makes a meaningful difference.
What makes this program so special is how personal it is. It’s not just about rare disease advocacy, though that remains central to our roots. It’s about supporting anything that matters to you—whether it’s a local fundraiser, a mental health initiative, or even helping someone afford medication for their pet. The program reflects what I’ve learned through this journey: we’re all a little rare, and what makes us unique deserves to be honored.
Transparency is a core value for RARE., so we use a platform called Grow and Fund to ensure every dollar goes directly to the nonprofit’s bank account. There’s no middleman or guesswork—just an honest, straightforward way to create impact.
Shop Your Purpose is one of my favorite parts of RARE. because it encapsulates everything we stand for: community, connection, and empowerment. It’s a way for us to show that what matters to you matters to us, and that every story, every cause, and every journey deserves to be seen and supported.
Great, appreciate you sharing that with us. Before we ask you to share more of your insights, can you take a moment to introduce yourself and how you got to where you are today to our readers.
Hi, I’m Kristine Hoestermann, and I’m the founder of RARE. At my core, I’m an advocate and connector, someone deeply passionate about creating spaces where people feel seen, valued, and empowered. My background as a licensed clinical therapist and my personal journey with rare and invisible illnesses—including Ehlers-Danlos Syndrome (EDS), POTS, and Autoimmune Small Fiber Neuropathy—are what inspired me to launch RARE.
RARE. is more than a brand; it’s a mission-driven community. We create apparel and accessories designed to raise awareness and foster inclusion for those affected by rare diseases, mental health challenges, and invisible struggles. But at its heart, RARE. is about connection and empowerment—helping people feel seen, supported, and embraced in a world that often overlooks their experiences.
How I Got Here
The idea for RARE. came to me during one of the most challenging periods of my life. Living with invisible illnesses can feel isolating. It’s a constant battle to navigate a world that doesn’t always understand or accommodate those challenges. I wanted to create something that could not only raise awareness for rare conditions but also give people a voice—a way to share their story, feel less alone, and find solidarity within a community that truly understands.
I realized there was a need for advocacy apparel that doesn’t just look great but also tells a story and sparks conversations. Every product we create is infused with that purpose. It’s about giving people a way to express themselves, connect with others, and feel empowered to embrace what makes them unique.
What We Offer
RARE. offers thoughtfully designed apparel and accessories that make advocacy stylish and meaningful. From T-shirts and hoodies with empowering messages to accessories that celebrate individuality, every piece is a conversation starter. We also run initiatives like Shop Your Purpose, which allows customers to direct a portion of their purchase to a cause or nonprofit that matters most to them.
But RARE. is more than just products—it’s a movement. Through our community, “The Herd,” we provide resources, support, and a space where people can share their journeys, find connection, and feel a sense of belonging.
What Sets Us Apart
What truly sets RARE. apart is our unwavering commitment to our mission. Everything we do is rooted in empathy, authenticity, and a desire to make a difference. We’re not just selling products; we’re fostering a community that validates and uplifts people who often feel invisible in their struggles.
Our focus on transparency and purpose-driven giving also makes us unique. Programs like Shop Your Purpose give our customers the power to create meaningful impact, whether that’s supporting rare disease research, mental health initiatives, or personal causes close to their hearts.
What I’m Most Proud Of
One of the things I’m most proud of is the community we’ve built. The Herd is such a beautiful, supportive group of individuals who remind me every day why I started RARE. Seeing people wear our products and use them to tell their stories or start important conversations is incredibly rewarding. It’s a constant reminder that we’re making a difference, one voice and one story at a time.
What I Want You to Know
At its core, RARE. is about making the invisible visible. Whether you’re living with a rare condition, navigating mental health challenges, coping with invisible struggles, supporting a loved one, or simply standing as an ally, RARE. is here for you. If you don’t see yourself in the rare disease or mental health communities, that’s okay too—there’s space for you here. RARE. is about embracing what makes each of us unique and connecting through shared humanity.
We believe in the power of connection, in the beauty of embracing what makes us different, and in the importance of showing up for one another. RARE. isn’t just a brand—it’s a promise that no one has to navigate their journey alone. Together, we’re raising awareness, amplifying voices, and creating a world where every story matters.
We often hear about learning lessons – but just as important is unlearning lessons. Have you ever had to unlearn a lesson?
A lesson I had to unlearn is that advocacy has to look a certain way to make an impact. For a long time, I thought that being a strong advocate meant being on the front lines—speaking at conferences, attending every event, or engaging in constant direct activism. While those are important ways to create change, they didn’t feel natural for me.
When I first started RARE., I struggled with this idea. I thought, Am I doing enough if I’m not the loudest voice in the room? Am I really an advocate if I’m not out there in that traditional way? It made me question if I could truly create the kind of impact I envisioned.
But as RARE. grew, I realized that advocacy can take many forms. Through designing apparel that starts conversations, creating initiatives like Shop Your Purpose, and fostering a community like The Herd, I’ve learned that my way of advocating is just as valid. It’s about making space for others to feel seen, valued, and empowered—not just speaking up for them, but amplifying their voices.
I encourage anyone who is going through something to throw out the rulebook and do what aligns and feels right for them. By creating what I needed most in my darkest moment, I’ve been able to help so many more people than I ever could have imagined. Do things your beautifully rare way—only you can do what you were meant to do, and that’s where your greatest impact lies.
Have you ever had to pivot?
RARE. itself was born out of a pivot. For so much of my life, I prided myself on being capable and driven, excelling in the things I thought defined me. But when my body began to betray me, everything I thought I was good at seemed out of reach. I had to relearn how to exist in a world that no longer felt familiar. That time was incredibly dark, but it also forced me to evolve. I had to let go of trying to be the person I was before, stop chasing an idea of who I thought I should be, and instead weave myself back together in a way that felt authentic.
That personal pivot became the foundation for RARE.—a space born from my struggles, yet fueled by my desire to make others feel seen and less alone. But even within RARE., there was another moment when I had to step back and pivot again. About two years ago, I found myself stuck. The fire and passion that had propelled me through the first four years of building the brand had dimmed, and the way I’d been approaching things no longer aligned with who I’d become.
I knew closing RARE. wasn’t an option—I believed in it too much. But I also couldn’t keep running it in a way that felt disconnected from where I was emotionally and personally. It took a long time—nearly two years of self-reflection and growth—to figure out how to realign with the brand. Because RARE. is so deeply personal to me, it felt like an extension of my identity. I needed to find a way to honor the community, stay true to my mission, and let the brand grow into what I knew it could become, all while honoring my own evolution.
This past year, I’ve finally started to feel that alignment again. I’ve found my voice, my energy, and my stride with RARE., and it’s exciting to step into this next chapter. Pivoting—whether in life or business—isn’t easy, but it’s often where the most transformative growth happens. I’ve learned that it’s okay to take the time to pause, to realign, and to let things evolve in a way that feels right. That’s what has allowed me, and RARE., to move forward with purpose and passion.
Contact Info:
- Website: https://findyourrare.com
- Instagram: https://instagram.com/findyourrare.com
- Facebook: https://www.facebook.com/findyourrare
- Linkedin: https://www.linkedin.com/in/khoestermann/
- Twitter: https://x.com/findyourrare
- Youtube: https://www.youtube.com/@findyourRARE
- Other:
You’re Always Fine Podcast
yourealwaysfinepod.com
Because We Are Strong Podcast
https://findyourrare.buzzsprout.com
Image Credits
All rights to these photos are reserved and owned by RARE.