About The Rory Belle Foundation
Our foundation is a group of parents, family members, individuals, and medical professionals who have united together.
We care for everyone touched by NARS1 disorder. We champion scientific research and medical advances into NARS1. We will change the future for those with NARS1 disorder by connecting families, sharing knowledge with researchers and clinicians, and discovering treatments.
Our purpose is to champion opportunities and change outcomes for every one impacted by NARS1 disorder, every single day.
The Home for NARS1 Families Worldwide
When you’ve just received a NARS1 diagnosis, and you don’t know what to do - we want to be there for you.
When you’re living with the NARS1 disorder day to day and you need help, support or someone just to share experiences with, we’re here for you.
We’re Here For You - Wherever You Are!
While The Rory Belle Foundation is based in the United States, we’re committed to being a global community for NARS1 disorder. That’s why we’ve invested in resources and technology to ensure we can serve people in all languages.
We can provide interpreters for individual phone calls with our team and live interpretation of our virtual meetings.
Need one of our documents translated or want to email us in your preferred language?
NARS1 disorder is an ultra rare genetic condition impacting the lives of dozens of incredible children. But together, we bring hope and joy to families.
Care - We care for each and everyone of our NARS1 families and do everything within our power to give them the help and support they need every day.
Champion - We champion research into NARS1 to pinpoint the drugs and therapies that can help families care for those living with NARS1 disorder.
Change - We change the future for our NARS1 families. We change understanding of the disease and its impact. We change outcomes, working towards therapeutics and a cure that’s within reach.
Learn more about what the Rory Belle Foundation means to members of our community
This video was compiled for our 2024 gala fundraiser with help from our families with NARS1 disorder.
