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STXBP1 Foundation
What is STXBP1?
Patients & Families
Genetic Testing
Newly Diagnosed
Register in our Contact List
Enroll in STARR Study
Clinical Trials and Research
World Map
Global Connect
Clinics
Clinicians
The Scientific Director's Corner
Partners in Advocacy
Glossary
VIP Siblings Kits
Family Resources
Researchers
Researcher Resources
Basic and Preclinical Research
Clinical Trials and Observational Studies
Apply for a Grant
Million Dollar Bike Ride Grants for STXBP1
Research Funding Recipients
S-COMB Consortium
Publications & References
News & Events
News
Blog
Newsletter
Podcasts
2025 Summit+
Million Dollar Bike Ride
Events
Past Conferences
Move To Cure
September Awareness Month
Patient-Focused Drug Development Meeting
Get Involved
Fundraise
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Volunteer
Community Connect
The Grands Society
Advocacy
Collateral & Brand
Store
About
About
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STXBP1 Film
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What is STXBP1?
Folder: Patients & Families
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Genetic Testing
Newly Diagnosed
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Capsida Biotherapeutics granted orphan drug designation for potential gene therapy for STXBP1-related disorders
Charlene Rigby 11/2/24 Charlene Rigby 11/2/24

Capsida Biotherapeutics granted orphan drug designation for potential gene therapy for STXBP1-related disorders

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FDA Grants Orphan Drug Designation to Capsida Biotherapeutics for Potential Treatment of STXBP1 Developmental and Epileptic Encephalopathy
Russ Novy 11/1/24 Russ Novy 11/1/24

FDA Grants Orphan Drug Designation to Capsida Biotherapeutics for Potential Treatment of STXBP1 Developmental and Epileptic Encephalopathy

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Advancing Toward Gene Therapies for Rare Epilepsies
Russ Novy 10/15/24 Russ Novy 10/15/24

Advancing Toward Gene Therapies for Rare Epilepsies

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Newly Published “Voice of the Patient Report”
Russ Novy 10/2/24 Russ Novy 10/2/24

Newly Published “Voice of the Patient Report”

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STXBP1 Census - Q3 2024
Charlene Rigby 9/30/24 Charlene Rigby 9/30/24

STXBP1 Census - Q3 2024

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Six patient advocacy groups collaborate to co-fund a single-center observational study of seizure types in rare genetic epilepsies
Russ Novy 9/19/24 Russ Novy 9/19/24

Six patient advocacy groups collaborate to co-fund a single-center observational study of seizure types in rare genetic epilepsies

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NPR Stateside Podcast: One family's fight to find a cure for daughter's rare genetic disorder
Russ Novy 8/20/24 Russ Novy 8/20/24

NPR Stateside Podcast: One family's fight to find a cure for daughter's rare genetic disorder

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Glowing reviews for STXBP1-Related Disorders Research
Russ Novy 7/30/24 Russ Novy 7/30/24

Glowing reviews for STXBP1-Related Disorders Research

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The STXBP1 Foundation and Children’s Hospital of Philadelphia Announce Phase 2 of the STARR Study for Clinical Trial Readiness, and Clinic Expansion
Russ Novy 7/17/24 Russ Novy 7/17/24

The STXBP1 Foundation and Children’s Hospital of Philadelphia Announce Phase 2 of the STARR Study for Clinical Trial Readiness, and Clinic Expansion

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STXBP1 Census - Q2 2024
Charlene Rigby 7/5/24 Charlene Rigby 7/5/24

STXBP1 Census - Q2 2024

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About Us

The STXBP1 Foundation is a parent-led 501(c)3 non-profit (EIN #82-1439459). We are dedicated to creating awareness and finding a cure for STXBP1 disorders.

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