Rare Strides

We celebrate Rare Disease Day in honor of more than 300 million people living with rare diseases worldwide! We stand with you, fight beside you, and strive to embrace each day as a new opportunity to make rare visible in healthcare to support the rare community we love.

"If opportunity doesn't knock, build a door". Anonymous
Nothing extraordinary or of great value is ever produced in a comfort zone.
Life's tests build the testimony; step out in faith willing to make a positive difference for others...that is a life well lived." --Beth Nguyen, RN Founder

EveryLife Foundation for Rare Diseases EveryLife Foundation for Rare Diseases

Love comes in many forms…
It’s the hug from a hospital bed.
The courage in a diagnosis.
The strength of a family that refuses to give up.

This Valentine’s Day, we’re celebrating the bravest hearts we know — our rare warriors. 💙

Through the mission of Rare Wish and the innovation of Rare STRIDES, we continue to make rare visible, fund life-changing wishes, and create pathways to hope, healing, and community.

And of course… delivering love one hug at a time is our favorite ambassador — 🧸 Sunny the Rare Bear.

Because every rare patient deserves to feel seen, supported, and deeply loved.

💙 Happy Valentine’s Day from all of us at Rare Wish & Rare STRIDES

✨ Happy New Year from Rare Wish & Rare STRIDES ✨

As we welcome a new year, we’re filled with hope, gratitude, and purpose. Thank you for standing with us as we uplift rare families, advocate for awareness, and create pathways to brighter futures.

Here’s to new milestones, stronger communities, and continued impact in the year ahead. Together, we make rare visible. 💙🦓

This Christmas, we celebrate the rare moments that make life extraordinary--and the rare individuals who make the world a better place.

At Rare STRIDES, we believe every step you take is powerful, no matter how big or small. Each challenge is a chance to grow and shine. At Rare Wish, we know that every dream, every wish, is worth believing in and we strive to make each wish come true.

Together, we are here to Make Rare Visible---to spread kindness, hope, and empower each other to step boldly into the future. This season, let's continue to lift one another up, share our stories, and build a world where every rare moment matters and each rare journey begins with access to vetted resources and comprehensive personalized care.

Wishing you a Christmas filled with hope, love, and endless possibilities. Let your rare light shine brighter than ever in the year ahead because we care about you!

What an inspiring experience at the Pediatric Healthcare Innovation Summit 2025! We were truly honored to sponsor and attend this year. We were surrounded by incredible leaders and brilliant innovators who share our passion for advancing children’s health and rare disease care.

Every connection filled us with hope for the future.
A heartfelt thank you to Leanne West for inviting us to join this important conversation to empower the voice of the rare community!

We are so grateful for all of the leaders and visionaries driving meaningful change in pediatric healthcare. Together, we can make rare strides — and turn rare wishes into reality.

Let’s continue building meaningful partnerships that create impact and hope for rare families and children worldwide!

We are thrilled to announce that the Georgia Tech Chapter of
Create For Kids, a dedicated 501(c)(3) nonprofit organization committed to inspiring children through art and bringing joy to hospitalized children, has formed an exciting new partnership with Rare STRIDES Code Rare Community program and Rare Wish!

With a network of over 50 hospitals both domestically and internationally, Create For Kids continues to make a significant impact. Our collaboration with Create For Kids Georgia Tech chapter will provide students the unique opportunity to learn about more than 10,000 rare diseases, make a positive difference for rare families by assembling and creatively personalizing bears, which will then be donated to families affected by rare conditions.

Through this partnership, Georgia Tech students, along with Rare STRIDES and Rare Wish, will collectively work to promote visibility, support, and understanding for those impacted by rare conditions. Together we can make rare visible by spreading hope, joy, and a smile one bear at a time! 🐻✨

Together we can make rare visible in healthcare! If you are a stakeholder in the rare community, we invite you to become a Code Rare Community partner! You are invited to watch a powerful webinar about Code Rare on October 14th!

The goal of Code Rare is to provide medical teams in both hospital and pre-hospital environments awareness level training on a variety of rare diseases including foundational training on the identification, diagnosis, and management of these diseases and the utilization of Code Rare Classroom, Continuing Education, and Rare Model of Care tool.

The mission of Code Rare is to inspire medical teams to collaborate with rare experts, nonprofits, patients, and families to advance understanding about newborn screening, next steps, diagnostics and patient-centered clinical care delivery for rare diseases.

www.rarestrides.com/contact-us