Boston Family & Researcher Gathering - August 2026
Watch all of the presentations and discussions from our Family & Researcher conference in Boston.
Drug Repurposing, Explained
What if a medication that already exists could help with NARS1 Disorder? Watch Rachel explain drug repurposing and the research behind three promising candidates. For each one, take away a family guide and a clinical reference to share with your child's doctor.
NARS1 Hospital Passport
A simple, personalised document to help clinicians understand your child and provide safe, informed care, especially in hospital or emergency settings.
Helping Us Connect with Your Clinician
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
Asparagine and NARS1: A Guide for Families
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
Understanding the research toolkit
We have a lot of tools in our research kit - learn about them here.
Virtual Family Meeting - February 2026
A summary of the RBF Virtual Family Meeting, covering key updates on NARS1 research, clinical progress, and what it means for families.
Folleto para comprender el trastorno NARS1
Este útil folleto explica qué sucede cuando hay una mutación en el gen NARS1 y cómo eso causa el trastorno NARS1. Disponible en varios idiomas.
Review of Published NARS1 Literature - April 2025
Join genetic counselling student Sammy as he reviews the published literature on NARS1 disorder, covering key research findings and insights into the condition.
Virtual Family Meeting - February 2025
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.
Vídeo - Introducción al trastorno NARS1 y las enfermedades genéticas
Únase al estudiante de Consejería Genética, Sam, mientras habla sobre el trastorno NARS1: síntomas, genética y perspectivas familiares.
Virtual Family Meeting - April 2024
Watch our first ever virtual family meeting from April 2024