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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
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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 DeClercq 8/30/26 Family Meetings & Events Teri DeClercq 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 DeClercq 8/26/26 Potential Therapies & Research Explained Teri DeClercq 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 DeClercq 4/20/26 Practical Care & Templates Teri DeClercq 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 DeClercq 4/20/26 Practical Care & Templates Teri DeClercq 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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Asparagina i NARS1: Przewodnik dla rodzin
Potential Therapies & Research Explained Teri DeClercq 4/19/26 Potential Therapies & Research Explained Teri DeClercq 4/19/26

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

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Zrozumienie zestawu narzędzi badawczych
Potential Therapies & Research Explained Teri DeClercq 4/1/26 Potential Therapies & Research Explained Teri DeClercq 4/1/26

Zrozumienie zestawu narzędzi badawczych

W naszym zestawie badawczym mamy mnóstwo narzędzi - dowiedz się o nich tutaj.

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Virtual Family Meeting - February 2026
Family Meetings & Events Teri DeClercq 2/28/26 Family Meetings & Events Teri DeClercq 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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Understanding NARS1 Disorder Leaflet
Understanding NARS1 Disorder Teri DeClercq 11/1/25 Understanding NARS1 Disorder Teri DeClercq 11/1/25

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.

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Review of Published NARS1 Literature - April 2025</span>
Potential Therapies & Research Explained Teri DeClercq 4/10/25 Potential Therapies & Research Explained Teri DeClercq 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 DeClercq 2/12/25 Family Meetings & Events Teri DeClercq 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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Video - Introduction to NARS1 Disorder and Genetic Diseases
Understanding NARS1 Disorder Teri DeClercq 12/5/24 Understanding NARS1 Disorder Teri DeClercq 12/5/24

Video - Introduction to NARS1 Disorder and Genetic Diseases

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

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