Rare Strides

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...

07/29/2025

Congrats

We’re expanding: Join us for the Grand Opening of RDR’s newest clinical research site in Iselin, NJ! 🎉

📍 When: Monday, August 11, 2025
🕑 Time: 2:00 PM – 5:00 PM ET

Meet Dr Ashutosh Kumar our Consulting Medical Director, triple board-certified in Pediatrics, Child Neurology & Epilepsy, and a leader in FDA-approved trials for Duchenne Muscular Dystrophy.

Explore our new space and connect with the team driving innovation in rare disease research.

Message us with any questions or to RSVP.

07/05/2025

🎆🐻 Hi friends! It’s me, Sunny the Rare Bear!
I just wanted to remind you to have a safe, fun, and joy-filled 4th of July! 💙❤️💛
As you enjoy the fireworks and family time, don’t forget — there are rare warriors out there still fighting battles we can’t always see.
That’s why I’m here… to remind you that hope shines brighter when we shine together. ✨
🧸 If you believe in love, light, and lifting others up — tap that ❤️, hit share, and follow us to help .
From all of us at Rare Wish + Rare Strides, Happy Independence Day!
Stay safe, stay kind, and stay rare.
🎇💜
— Sunny the Rare Bear
👉 Follow | Like | Share to spread the rare love!

06/25/2025

👑 We’re headed to NORD’s Living Rare, Living Stronger event in Georgia this Friday, June 27! 💜

Rare STRIDES’ Beth Nguyen, Rare Wish’s Trena Myers, Ms. Elite United USA are proud to be among the few organizations with an info table at this powerful gathering of rare warriors and advocates.

Stop by our table to grab some rare resources, meet a nurse with rare, learn about Code Rare, and let’s talk about how we can help make rare visible in healthcare!

📍Georgia Aquarium
🗓️ Friday, June 27
🔗 More Info Here: https://rarediseases.org/event/living-rare-living-stronger-in-georgia/

04/11/2025

At Rare STRIDES®, we’re building an AI-driven medical app called Code Rare that transforms raw data into trusted, evidence-based insights.

Code Rare is precision medicine powered by AI and continuously vetted by nurses, doctors, and rare disease experts.

Rare STRIDES®’ ZEBRA is artificial intelligence support for rare diseases with medical oversight. Medical team decision making should lead clinical care in close consultation with their patient.

​Patients and their medical teams must have 24/7 access to trustworthy information on rare diseases. Bedside clinical care is demanding, constantly changing, and must be individualized to meet the unique needs of each patient in real time.

Rare STRIDES® ZEBRA ai was created to prioritize medical expertise and customize bedside care for rare diseases with vetted data and real time nursing triage. Its goal is to unite medical teams and patients with exceptional vetted rare disease assessments, cutting edge diagnostics, next step care coordination, and expert resources focused on rare diseases.

*Rare STRIDES® will donate a portion of annual proceeds to grant wishes for children and adults with rare diseases.



You can learn more here: https://www.rarestrides.com/zebra

04/04/2025

How Do You Give Back?

Hope the Zebra wants to know! Giving back comes in many forms! How do you like to support causes like Rare Wish to help ?

Poll Options:
✅ Donating – Every dollar makes a difference!
✅ Volunteering – Time is a priceless gift!
✅ Spreading Awareness – Sharing is caring!
✅ All of the Above! – We love our Rare Wish heroes!

www.rarewish.org