Family & Caregiver Resources

Category

Information Leaflets

Featured
Asparagine and NARS1: A Guide for Families
Information Leaflets
Asparagine and NARS1: A Guide for Families
Information Leaflets

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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Information Leaflets
Understanding the research toolkit
Information Leaflets
Understanding the research toolkit
Information Leaflets

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

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Information Leaflets
Understanding NARS1 Disorder Leaflet
Information Leaflets
Understanding NARS1 Disorder Leaflet
Information Leaflets

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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Information Leaflets

Documents & Templates

Featured
NARS1 Hospital Passport
Documents & Templates
NARS1 Hospital Passport
Documents & 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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Documents & Templates
Helping Us Connect with Your Clinician
Documents & Templates
Helping Us Connect with Your Clinician
Documents & 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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Documents & Templates

Family Meetings

Featured
Virtual Family Meeting - February 2026
Family Meetings
Virtual Family Meeting - February 2026
Family Meetings

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
Virtual Family Meeting - February 2025
Family Meetings
Virtual Family Meeting - February 2025
Family Meetings

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
Virtual Family Meeting - April 2024
Family Meetings
Virtual Family Meeting - April 2024
Family Meetings

Watch our first ever virtual family meeting from April 2024

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Family Meetings

Useful video resources

Featured
Review of Published NARS1 Literature - April 2025</span>
Useful Videos
Review of Published NARS1 Literature - April 2025
Useful Videos

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

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Useful Videos
Video - Introduction to NARS1 Disorder and Genetic Diseases
Useful Videos
Video - Introduction to NARS1 Disorder and Genetic Diseases
Useful Videos

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

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Useful Videos