A simple, personalised document to help clinicians understand your child and provide safe, informed care, especially in hospital or emergency settings.

Help us connect with clinicians who can support research and improve care for NARS1. Share these resources with your specialist to start the conversation. Available in multiple languages

An overview of asparagine in NARS1, including what it is, why it’s being explored, and what the upcoming clinical trial in France aims to understand. Available in multiple languages

We have a lot of tools in our research kit - learn about them here.

A summary of the RBF Virtual Family Meeting, covering key updates on NARS1 research, clinical progress, and what it means for families.

Join genetic counselling student Sammy as he reviews the published literature on NARS1 disorder, covering key research findings and insights into the condition.

Watch highlights from the NARS1 Family Meeting, February 2025, bringing together families, clinicians, and researchers to share updates, insights, and experiences from across the community.

Join Genetic Councillor Student, Sam, as he talks through NARS1 Disorder - symptoms, genetics and family perspectives.

Watch our first ever virtual family meeting from April 2024

This useful leaflet explains what happens when there is a mutation in the NARS1 gene and how that causes NARS1 Disorder. Available in multiple languages.