A Path to a Cure for NARS1 Disorder

The Rory Belle Foundation is hard at work ensuring that all of the necessary tools and resources are collected and completed in order to achieve different treatment options for individuals with NARS1.

Family participation in research is critical to our success!

How can you make a difference today?

  1. Email us to coordinate blood and skin sample collection. Samples from patients and families are actively being used by our researchers to help answer questions about NARS1 disorder. The more variety we have in our samples, the better our results! Sample collection costs are paid for by the generous contributions of our donors.

  2. Tell your story through our patient registry, RARE-X. Find out more about this very important project below!

Why a Patient Registry?

  • This is our best method to learn about how NARS1 disorder progresses and to identify symptoms that haven’t previously been reported in published literature.

  • This information allows us to help our family members with NARS1 disorder and better educate our doctors and researchers

  • Collecting this information prepares us as a community for clinical studies

Our Understanding of NARS1 Disorder BEFORE our Patient Registry

Our Understanding of NARS1 Disorder WITH our Patient Registry

Why RARE-X?

  • It is a nonprofit created to accelerate rare disease research, treatments, and cures by removing barriers for data collection and sharing

  • RARE-X does not own, sell, or do research with the data they collect. They provide worldwide data collection that meets ethical standards

  • It is no cost to patients, organizations, or researchers

  • You own the health information you provide RARE-X

    1. Your personal details are private

    2. Researchers can access the de-identified health information you provide. De-identified means that researchers can see the data but they do not know who the data belongs to and it can’t be tied back to you.

  • It speeds up research and drug development

    1. This can help with our current research

    2. Allows others (researchers, drug developers, doctors) to find out more about NARS1 disease

Ready to make an impact? Click below!

Want more information about RARE-X or need some help getting started?

Checkout our introduction and setup video!

Your donations help us fund research into the gene therapy testing that could reduce symptoms in children with NARS1