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
Asparagina i NARS1: Przewodnik dla rodzin
Przegląd asparaginy w NARS1, w tym czym ona jest, dlaczego jest badana i co ma na celu zrozumienie nadchodzącego badania klinicznego we Francji. Dostępne w wielu językach
Zrozumienie zestawu narzędzi badawczych
W naszym zestawie badawczym mamy mnóstwo narzędzi - dowiedz się o nich tutaj.
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.
Understanding NARS1 Disorder Leaflet
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.
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.
Video - Introduction to NARS1 Disorder and Genetic Diseases
Join Genetic Councillor Student, Sam, as he talks through NARS1 Disorder - symptoms, genetics and family perspectives.
Virtual Family Meeting - April 2024
Watch our first ever virtual family meeting from April 2024