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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
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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
Folder: About
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About The Rory Belle Foundation
Rory Belle's Story
Our Team
Transparency & Accountability
Folder: NARS1 Disorder
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What is NARS1 Disorder?
You've Had a NARS1 Disorder Diagnosis
FAQs
Access to Free Genetic Testing
Folder: Resources
Back
Family Resources
Scientific Publications
Folder: Research
Back
A Path to a Cure
Our Research Priorities & Opportunities
Research Grants
Events
Blog
Contact
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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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Virtuelles Familientreffen – Februar 2026
Family Meetings & Events Teri DeClercq 2/28/26 Family Meetings & Events Teri DeClercq 2/28/26

Virtuelles Familientreffen – Februar 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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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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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