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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
Clinicians
Family Resources
Clinics
Global Connect
Partners in Advocacy
The Scientific Director's Corner
Glossary
VIP Siblings Kits
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
September Awareness Month
Move To Cure
2025 Summit+
Million Dollar Bike Ride
Events
Past Conferences
Patient-Focused Drug Development Meeting
Get Involved
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About
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What is STXBP1?
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Genetic Testing
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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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Over 3,000 People Have Signed our Petition to the CDC for an ICD-10 Code
Russ Novy 5/20/24 Russ Novy 5/20/24

Over 3,000 People Have Signed our Petition to the CDC for an ICD-10 Code

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Cain Labs and Duncan Neurological Research Institute researchers find a novel first-in-class gene therapy alleviates symptoms in animal models of STXBP1 disorder
Russ Novy 5/13/24 Russ Novy 5/13/24

Cain Labs and Duncan Neurological Research Institute researchers find a novel first-in-class gene therapy alleviates symptoms in animal models of STXBP1 disorder

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Strides in STXBP1: What Happened Last Month in STXBP1 Research?
Russ Novy 5/9/24 Russ Novy 5/9/24

Strides in STXBP1: What Happened Last Month in STXBP1 Research?

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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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info@stxbp1disorders.org

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