Family & Caregiver Resources

Category

Understanding NARS1 Disorder

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Understanding NARS1 Disorder Leaflet
Understanding NARS1 Disorder
Understanding NARS1 Disorder Leaflet
Understanding NARS1 Disorder

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.

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Understanding NARS1 Disorder
Video - Introduction to NARS1 Disorder and Genetic Diseases
Understanding NARS1 Disorder
Video - Introduction to NARS1 Disorder and Genetic Diseases
Understanding NARS1 Disorder

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

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Understanding NARS1 Disorder

Potential Therapies & Research Explained

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Drug Repurposing, Explained
Potential Therapies & Research Explained
Drug Repurposing, Explained
Potential Therapies & Research 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.

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Potential Therapies & Research Explained
Asparagine and NARS1: A Guide for Families
Potential Therapies & Research Explained
Asparagine and NARS1: A Guide for Families
Potential Therapies & Research Explained

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

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Potential Therapies & Research Explained
Understanding the research toolkit
Potential Therapies & Research Explained
Understanding the research toolkit
Potential Therapies & Research Explained

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

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Potential Therapies & Research Explained

Practical Care & Templates

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NARS1 Hospital Passport
Practical Care & Templates
NARS1 Hospital Passport
Practical Care & Templates

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

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Practical Care & Templates
Helping Us Connect with Your Clinician
Practical Care & Templates
Helping Us Connect with Your Clinician
Practical Care & Templates

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

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Practical Care & Templates

Family Meetings & Events

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Virtual Family Meeting - February 2026
Family Meetings & Events
Virtual Family Meeting - February 2026
Family Meetings & Events

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

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Family Meetings & Events
Virtual Family Meeting - February 2025
Family Meetings & Events
Virtual Family Meeting - February 2025
Family Meetings & Events

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.

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Family Meetings & Events
Virtual Family Meeting - April 2024
Family Meetings & Events
Virtual Family Meeting - April 2024
Family Meetings & Events

Watch our first ever virtual family meeting from April 2024

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Family Meetings & Events