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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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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
Riunioni ed eventi familiari Teri DeClercq 8/30/26 Riunioni ed eventi familiari 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
Cura pratica e modelli Teri DeClercq 4/20/26 Cura pratica e modelli Teri DeClercq 4/20/26

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.

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Aiutaci a connetterci con il tuo medico
Cura pratica e modelli Teri DeClercq 4/20/26 Cura pratica e modelli Teri DeClercq 4/20/26

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

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Asparagine and NARS1: A Guide for Families
Potential Therapies & Research Explained Teri DeClercq 4/19/26 Potential Therapies & Research Explained Teri DeClercq 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 DeClercq 4/1/26 Potential Therapies & Research Explained Teri DeClercq 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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Incontro virtuale di famiglia - febbraio 2026
Riunioni ed eventi familiari Teri DeClercq 2/28/26 Riunioni ed eventi familiari Teri DeClercq 2/28/26

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.

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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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Incontro virtuale di famiglia - febbraio 2025
Riunioni ed eventi familiari Teri DeClercq 2/12/25 Riunioni ed eventi familiari Teri DeClercq 2/12/25

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.

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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
Riunioni ed eventi familiari Teri DeClercq 4/11/24 Riunioni ed eventi familiari 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