Helping Us Connect with Your Clinician
Resources to share with your Clinician to help support research
Because NARS1 is exceptionally rare, many clinicians will only ever see one patient. That makes it harder to build shared understanding, improve care, and move research forward.
These resources are designed to help change that.
By sharing them with your child’s neurologist, geneticist, or specialist, you can help us identify clinicians who are open to working more closely with the Rory Belle Foundation — whether that’s connecting into a global network, contributing to research, or supporting the collection of vital samples.
You’ll find:
A short letter you can personalise and share directly with your clinician
A clinical overview leaflet with more detail on NARS1 and current research
Together, these help us build relationships with clinicians around the world, strengthening knowledge, improving consistency of care, and accelerating progress towards treatments.