Medical InformationResources
The following list contains links to third party web sites. Dravet Syndrome Foundation is not responsible for the content or privacy policies of these external sites. While we try to only list sites here that we feel contain useful information for our families, a listing here should not be construed as an endorsement for any products or services they may provide.
Research & Education
American Epilepsy Society
American Epilepsy Outreach Foundation
Child Neurology Foundation
Epilepsy Foundation
Epilepsy Phenome/Genome Project
Epilepsy Therapy Development Project
Joey’s Song – The Joseph Gomoll Foundation
National Institute of Neurological Disorders and Stroke (NINDS)
PCDH19 Alliance
Purple Day
SUDEP Aware
International Dravet Syndrome Organizations
France (Alliance Syndrome de Dravet)
Germany (Dravet Syndrom Eltern-Selbsthilfe)
Italy (Dravet Italia Onlus)
Italy (Gruppo Famiglie Dravet)
Netherlands (Dravet Groep Nederland)
Romania (Dravet Romania)
Spain (La Fundación Síndrome de Dravet)
Switzerland (Swiss Dravet Syndrome Association)
UK (Dravet Syndrome UK)
Ketogenic Diet
The Charlie Foundation (US)
Matthew’s Friends (UK)
KetoCal Recipes (US)
Information on Stiripentol (Diacomit)
Patient & Family Resources
ICE Epilepsy Alliance
LGS Foundation
Seizure Tracker
Caligor Rx (importer of stiripentol/diacomit)
Moran Eye Center (providers of Fl-41 tinted glasses)
Pamphlets/Informational Handouts
IICEPR (International Ion Channel Epilepsy Patient Registry) Brochure
School Issues
Fact Sheet for School Settings
Support Groups
Friends & Extended Family Support
If you have a suggestion for a resource, please email info@dravetfoundation.org