Rare Strides

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

03/16/2025

Heads up! We're at MDA Conference sharing the latest in rare disease research. Come by Booth # 525 and chat. Don't miss our welcome reception tonight at 6:00 PM EST. Let's connect!

03/14/2025

🎙️ ICYMI: Introducing Georgia Life Sciences Podcast

The Georgia Life Sciences Podcast is ideal for anyone looking to stay informed about Georgia's evolving life sciences landscape and learn about opportunities for growth, investment, and collaboration in this exciting field.

Season one episodes will be featured bi-weekly and can be downloaded here: https://hubs.ly/Q03bWHLt0

03/14/2025

RDR is proud to announce the addition of Dr. Renata Shih, a distinguished pediatric cardiologist, as our new Principal Investigator in Atlanta. With a decade of experience and a passion for advancing rare disease research, Dr. Shih is a force to be reckoned with. Her impressive credentials speak volumes: pediatric residency and fellowship at the University of Florida, a tenured professorship, and double board certifications. But it's her unwavering dedication to patient care and her relentless pursuit of groundbreaking treatments that truly set her apart. Welcome to RDR, Dr. Shih. Together, we'll push the boundaries of pediatric research and transform the lives of patients.