RUN RARE: The Rarety 5K is more than just a race... it’s a movement. A celebration. A call to action. It’s a heartfelt and high-energy event powered by Rarety, a nonprofit organization founded by Taylor, a Class of 2026 student who has been bravely battling a rare disease for years.
This 5K honors the often unseen, unheard, and misunderstood voices of rare warriors around the world...especially young people like Taylor, whose personal journey with a rare condition became the heartbeat of this event. Taylor’s story of strength, perseverance, and faith is a testament to what it means to keep showing up, to keep fighting, and to never let a diagnosis define your destiny.
RUN RARE invites people of all ages, abilities, and backgrounds to walk, run, or roll in solidarity with the rare disease community. Whether you’re lacing up in memory of someone you love, standing beside a warrior in your life, or showing support from across the country in our virtual option...your steps help amplify a message that is too often overlooked:
Being different is powerful!!!! And every rare story deserves to be seen, heard, and celebrated!!!
Our Mission
The purpose of RUN RARE is to:
Raise awareness for rare diseases, many of which are unknown, underfunded, or misunderstood.
Shine a light on the stories of rare warriors, reminding them and the world that they are not invisible.
Provide a space of unity, inspiration, and strength for families, caregivers, and advocates.
Support the ongoing programs of Rarety, including education, youth empowerment, outreach, and resources for rare disease families.
Why It Matters
There are over 7,000 rare diseases affecting more than 300 million people worldwide, many of them children. Yet because of their rarity, many patients face delayed diagnoses, limited treatment options, and a lack of public awareness or understanding.
RUN RARE is about changing that!!
When you join this 5K, you are not just registering for a race... you’re joining a movement that fights for equity, inclusion, awareness, and support for a deeply underrepresented community. You’re helping us say loudly and clearly: It’s OK to be different. And being rare is something to be proud of!!
