Rare Strides

11/13/2025

Two days. Countless connections. Endless impact. 💙
Advocating at Georgia Tech’s Pediatric Innovations Summit with Portal Innovations — helping in pediatrics! 🌈

11/11/2025

Sunny the Rare Bear and 🦓 Hope the Zebra are sending love, gratitude, and joy to all who have served this Veterans Day!

At Rare Wish and Rare STRIDES, we honor the strength, courage, and sacrifice of our Veterans—true warriors who inspire us to keep fighting for visibility, understanding, and hope in the rare disease community. 💜

Let’s salute every hero, both seen and unseen, who helps every day.
👉 Follow, share, and tag a Veteran you’re thankful for today!

11/08/2025

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!

10/31/2025

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! 🐻✨

10/21/2025

Rare Wish & Rare STRIDES at The Home Depot!

We had an amazing time attending Home Depot’s Inclusion & Invisible Disability Day at their corporate offices! What an inspiring event celebrating awareness, understanding, and inclusion in the workplace. We’re so grateful for the opportunity to share our mission, connect with new friends, and help together!

We were also excited to see community partners at the event with us, thank you Sunflower program and Love Box!
Stay tuned for more Rare Moments with Home Depot!

10/02/2025

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

10/01/2025

🌟 Help Us Make Rare Visible 🌟

Every child and adult living with a rare disease deserves a smile of hope. 💜 Sunny the Rare Bear is more than a cuddly friend — he’s a symbol of courage, joy, and community.

Right now, we have a growing waitlist of loving homes waiting to welcome Sunny 🐻✨ — but we need YOUR help to make it happen.

💝 Your donation today helps us create more Sunny Bears, so no one facing a rare disease feels unseen or alone.

👉 Adopt a Sunny. Share a smile. Change a life.
🌐 Donate or adopt now at www.rarewish.org

💜 Together, we can shine brighter, spread joy, and make rare visible!
📢 Please SHARE this video to help us reach more hearts.

09/01/2025

Happiest Birthdays to our fierce leader! Happy Birthday Beth! She is helping to

09/01/2025

💜✨ Happy Labor Day from Rare Wish & Rare STRIDES!

Today, we pause to celebrate the hard work, dedication, and resilience of so many — especially rare warriors, caregivers, and the healthcare heroes who never stop fighting for answers.

May your day be filled with rest, joy, and gratitude for all that you do. 💫

👉 Follow, share, and support us as we continue to — together, we’re building hope one step at a time.

08/26/2025

08/07/2025

A pivotal moment for Congratulations to Renata Shih and the entire RDR research team to make this a success 🎉 Dosing the first patient in this clinical trial is a major milestone for the FSHD community. EPI-321 is the first therapeutic candidate designed to target the root cause of the disea...