The Home for NARS1 Families
We care for everyone touched by NARS1 disorder. We will change the future for those with NARS1 disorder by connecting families, sharing knowledge with researchers and clinicians, and discovering treatments.
Come and join us. Meet other families, support The Rory Belle Foundation, or join our family of researchers and medical professionals. Together we can make a difference!
Care
We care for each and every family with NARS1 disorder and do everything within our power to give them the help and support they need every day.
Champion
We champion research into NARS1 disorder to pinpoint drugs and therapies that can help families care for those living with NARS1 disorder.
Change
We change the future for our families. We change understanding of the disease and its impact. We change outcomes, working tirelessly towards treatments and cures that are within reach.
Have you received a NARS1 Disorder diagnosis?
We are here to support you in any way that we can. Checkout the link below for more details on NARS1 disorder, our current research, and what you can do to help!
Rory’s Story
When Rory Belle was born in 2019 and welcomed into a loving family complete with a big brother and parents who were madly in love with their little peanut. Soon after, it became clear that something wasn’t quite right and the long journey to a diagnosis of NARS1 disorder began. Rory's life is now lived through The Rory Belle Foundation, which provides others born with NARS1 disorder a chance to live with joy everyday.
A Path to a Cure for NARS1 Disorder
We are hard at work advancing NARS1 disorder research! We are collaborating with researchers and clinicians across the globe to drive our patient-focused research plan forward.