Medical InformationResources

RESOURCES

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 (Stichting Dravetsyndrooom)

Romania (Dravet Romania)

Spain (La Fundación Síndrome de Dravet)

Sweden (Dravets Syndrome Association Sweden)

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)

Brochure from Manufacturer


Patient & Family Resources

CeCe Cares
Danny Did

ICE Epilepsy Alliance
LGS Foundation
Seizure Tracker
Caligor Rx (importer of stiripentol/diacomit)

Moran Eye Center (providers of Fl-41 tinted glasses)

My Seizures No More

 

Pamphlets/Informational Handouts

DSF Brochure

IICEPR (International Ion Channel Epilepsy Patient Registry) Brochure

 

School Issues

Fact Sheet for School Settings

 

Support Groups

Family & Caregiver Support

Dravet Dietary Approaches

Friends & Extended Family Support

Sibling Support Group


 

If you have a suggestion for a resource, please email us