Links

STXBP1 Disorders
Parents of STXBP1 Facebook Group
Padres STXBP1-Spanish Community & Website
STXBP1Genetic Disorder
Ohtahara Families
Munc 18 – French

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

Simons VIP Connect – patient and family registry for rare genetic changes

Epilepsy Genetics Initiative (EGI) – centralized database for genetic data of people with epilepsy

Wacean -seizure tracker

Generic Testing

Ambry
Invitae
GeneDX

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  
Branding Guildelines

STXBP1 FAQs

Personalize a Brochure by contacting us!