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
Un documento semplice e personalizzato per aiutare i medici a comprendere tuo figlio e fornire cure sicure e informate, soprattutto in ambito ospedaliero o di emergenza.
Aiutaci a connetterci con il tuo medico
Aiutaci a entrare in contatto con medici che possono supportare la ricerca e migliorare l'assistenza per NARS1. Condividi queste risorse con il tuo specialista per iniziare la conversazione. Disponibile in più lingue
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.
Incontro virtuale di famiglia - febbraio 2026
Una sintesi del RBF Virtual Family Meeting, che comprende aggiornamenti chiave sulla ricerca NARS1, sui progressi clinici e sul suo significato per le famiglie.
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.
Incontro virtuale di famiglia - febbraio 2025
Guarda i momenti salienti del NARS1 Family Meeting, febbraio 2025, che ha riunito famiglie, medici e ricercatori per condividere aggiornamenti, approfondimenti ed esperienze provenienti da tutta la comunità.
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