You’ve Had A NARS1 Disorder Diagnosis
Receiving a NARS1 diagnosis can be overwhelming. As an ultra rare genetic disorder with around 100 known cases worldwide, it’s understandable to feel uncertain about the road ahead. At The Rory Belle Foundation, we’re here to guide you through every step of this journey - offering support, information, and hope.
The Rory Belle Foundation is dedicated to creating a supportive community for families navigating life with a NARS1 disorder diagnosis. You’re not alone— and we’re here to connect, empower, and help you find clarity in this complex journey. Whether you’re seeking resources, emotional support, or simply someone who understands, you’ve come to the right place.
A Safe Space
What Next?
Join our Facebook Support Group
Connect with other families who truly understand what you’re going through. Our Facebook group is a safe, private space where you can share experiences, ask questions, and find encouragement from others walking a similar path.
Get in touch with The Rory Belle Team
Have questions? Need guidance? Our dedicated team, many of whom are NARS1 parents themselves, deeply understand what you’re going through. We’re here to provide personalized support, whether you’re looking for medical resources, help in understanding the diagnosis, or simply someone who truly gets it. Don’t hesitate to reach out—we’re here for you every step of the way.
Join Our RARE-X Patient Registry
RARE-X is a nonprofit organization designed to accelerate rare disease research, treatments, and cures by breaking down barriers to data collection and sharing. It provides a secure platform where families can contribute their health information to support vital research efforts.
Your participation in RARE-X will directly support the ongoing research efforts at the Rory Belle Foundation, helping scientists and medical professionals learn more about NARS1 and how to combat it effectively. Learn more about our ongoing research efforts and our RARE-X patient registry here.
Help us to accelerate the research: By contributing your information, you’re helping to speed up the development of treatments and potentially life-saving therapies.
Joy today and hope for the future, for every NARS1 family
At The Rory Belle Foundation, we believe that no family should face a NARS1 diagnosis alone. Together, we can build a community of strength, understanding, and hope. Join us in our mission to create a brighter future for all those affected by NARS1 disorder.
