Links

Welcome to Parents and Caregivers of newly diagnosed patients with the STXBP1 disorder
Start Your Journey with Us Here with 3 Handy Tips

STXBP1 Disorders Facebook Page
Parents of STXBP1 Facebook Group
STXBP1 Spanish Facebook Group
STXBP1 Spain Site
STXBP1 German Site
STXBP1 Netherlands Site
STXBP1 Dutch Facebook Group
Munc 18 French Facebook Group
Ohtahara Facebook Group

Family Support

Handicap Accessible Vehicles
Grants & Resources for Special Needs
Able Act

Music
“Behind the Blue”- Dedicated to our Children
by Jamie Stem & Anne Johnson

“Drowning”- For our Parents you are never alone
by Jamie Stem & Anne Johnson

STX-NOt-For-Profits

Dravet Foundation
CURE
NORD
Unique
Global Genes
Autism Speaks
Zefer Foundation
Epilepsy Foundation
Make a Wish Foundation

Registries & Patient Portals

Simons Searchlight – patient and family registry for STXBP1 Disorders and other rare genetic changes
Epilepsy Genetics Initiative (EGI) – centralized database for genetic data of people with epilepsy
Wacean -seizure tracker

Generic Testing

Ambry
Invitae
GeneDX
Genetics Glossary

Research

STXBP1 Foundation Research
CURE Webcast Series
STXBP1-E Center Amsterdam
Published Medical #1

STXBP1Disorders – General – Professional Print Version
STXBP1 Disorders -Scientific Professional Print Version
STXBP1 Disorders – Emma 
STXBP1 FAQs
Personalize a Brochure by contacting us!

STXBP1 Disorders

Brand Guildelines