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The Rory Belle Foundation
About The Rory Belle Foundation
Rory Belle's Story
Our Team
Transparency & Accountability
What is NARS1 Disorder?
You've Had a NARS1 Disorder Diagnosis
FAQs
Access to Free Genetic Testing
Family Resources
Scientific Publications
A Path to a Cure
Our Research Priorities & Opportunities
Research Grants
Events
Blog
Contact
Shop
Ways to Give
Matching Gifts Program
Rare-X
Donate
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About The Rory Belle Foundation
Rory Belle's Story
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What is NARS1 Disorder?
You've Had a NARS1 Disorder Diagnosis
FAQs
Access to Free Genetic Testing
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Boston Family & Researcher Gathering - August 2026
Family Meetings & Events Teri De Clercq 8/30/26 Family Meetings & Events Teri De Clercq 8/30/26

Boston Family & Researcher Gathering - August 2026

Watch all of the presentations and discussions from our Family & Researcher conference in Boston.

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Drug Repurposing, Explained
Potential Therapies & Research Explained Teri De Clercq 8/26/26 Potential Therapies & Research Explained Teri De Clercq 8/26/26

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.

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NARS1 Hospital Passport
Practical Care & Templates Teri De Clercq 4/20/26 Practical Care & Templates Teri De Clercq 4/20/26

NARS1 Hospital Passport

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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Helping Us Connect with Your Clinician
Practical Care & Templates Teri De Clercq 4/20/26 Practical Care & Templates Teri De Clercq 4/20/26

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

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Asparagine and NARS1: A Guide for Families
Potential Therapies & Research Explained Teri De Clercq 4/19/26 Potential Therapies & Research Explained Teri De Clercq 4/19/26

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

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Understanding the research toolkit
Potential Therapies & Research Explained Teri De Clercq 4/1/26 Potential Therapies & Research Explained Teri De Clercq 4/1/26

Understanding the research toolkit

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

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Virtual Family Meeting - February 2026
Family Meetings & Events Teri De Clercq 2/28/26 Family Meetings & Events Teri De Clercq 2/28/26

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.

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Folleto para comprender el trastorno NARS1
Understanding NARS1 Disorder Teri De Clercq 11/1/25 Understanding NARS1 Disorder Teri De Clercq 11/1/25

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.

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Review of Published NARS1 Literature - April 2025</span>
Potential Therapies & Research Explained Teri De Clercq 4/10/25 Potential Therapies & Research Explained Teri De Clercq 4/10/25

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.

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Virtual Family Meeting - February 2025
Family Meetings & Events Teri De Clercq 2/12/25 Family Meetings & Events Teri De Clercq 2/12/25

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.

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Vídeo - Introducción al trastorno NARS1 y las enfermedades genéticas
Understanding NARS1 Disorder Teri De Clercq 12/5/24 Understanding NARS1 Disorder Teri De Clercq 12/5/24

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.

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Virtual Family Meeting - April 2024
Family Meetings & Events Teri De Clercq 4/11/24 Family Meetings & Events Teri De Clercq 4/11/24

Virtual Family Meeting - April 2024

Watch our first ever virtual family meeting from April 2024

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The Rory Belle Foundation is a public charity recognized as tax-exempt by the IRS under Section 501(c)(3).  EIN: 88-1920584

Contact Us

hello@therorybellefoundation.org
1-720-432-8087

Mailing Address:
8275 E 11th Ave
#200621
Denver, CO 80220