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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
Ways to Give
Volunteer
Community Connect
The Grands Society
Advocacy
Collateral & Brand
Store
About
About
Team
Scientific Advisory Board
Census
STXBP1 Film
Fast Forward Strategic Plan
Financials
Contact
Search
Donate
What is STXBP1?
Folder: Patients & Families
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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
Folder: Researchers
Back
Researcher Resources
Basic and Preclinical Research
Clinical Trials and Observational Studies
Apply for a Grant
Million Dollar Bike Ride Grants for STXBP1
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S-COMB Consortium
Publications & References
Folder: News & Events
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2025 Summit+
Million Dollar Bike Ride
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September Awareness Month
Patient-Focused Drug Development Meeting
Folder: Get Involved
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STXBP1 Census - Q3 2023
Charlene Rigby 10/1/23 Charlene Rigby 10/1/23

STXBP1 Census - Q3 2023

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In The News: How an STXBP1-related Disorder Diagnosis Changes a Dodgers Pitcher's Life
Russ Novy 9/15/23 Russ Novy 9/15/23

In The News: How an STXBP1-related Disorder Diagnosis Changes a Dodgers Pitcher's Life

Mainstream media coverage of STXBP1 disorders during September Awareness Month

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STXBP1 Foundation Announces STARR Study for Clinical Trial Readiness
Russ Novy 7/21/23 Russ Novy 7/21/23

STXBP1 Foundation Announces STARR Study for Clinical Trial Readiness

Learn more about the STXBP1 study and US clinics

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2023 STXBP1 Summit+  Science Highlights are Now Available in Conference Preview Video
Russ Novy 7/13/23 Russ Novy 7/13/23

2023 STXBP1 Summit+ Science Highlights are Now Available in Conference Preview Video

See what science updates to watch for at this year’s conference.

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STXBP1 Foundation Organizes 5th Annual Family Conference for STXBP1-Related Disorders
Russ Novy 7/10/23 Russ Novy 7/10/23

STXBP1 Foundation Organizes 5th Annual Family Conference for STXBP1-Related Disorders

For the first time, the STXBP1 Foundation will hold the yearly event in the Western US, and provides an inclusive agenda encompassing scientific updates and community building

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STXBP1 Census - Q2 2023
Charlene Rigby 6/30/23 Charlene Rigby 6/30/23

STXBP1 Census - Q2 2023

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Help the STXBP1 Foundation build our biomarker repository. Work with our partner, COMBINEDBrain, at any industry conference near you.
Russ Novy 5/15/23 Russ Novy 5/15/23

Help the STXBP1 Foundation build our biomarker repository. Work with our partner, COMBINEDBrain, at any industry conference near you.

What actually is biomarker research?

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The First STXBP1 Census!
Charlene Rigby 4/2/23 Charlene Rigby 4/2/23

The First STXBP1 Census!

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Penn Rare Disease Scientist Studies Daughter's Epilepsy, Wins Grant
Russ Novy 3/7/23 Russ Novy 3/7/23

Penn Rare Disease Scientist Studies Daughter's Epilepsy, Wins Grant

Cover article from the Philadelphia Inquirer featuring Ben Prosser & Erin Prosser…and of course Lucy

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Rare in Times Square
Russ Novy 3/7/23 Russ Novy 3/7/23

Rare in Times Square

Wide exposure for STXBP1 Disorders during Rare Disease Day in NYC

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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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