What is
Dravet Syndrome
Dravet Syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and catastrophic form of intractable epilepsy that begins in infancy. Specialist Area Learn more
Our Mission The Dravet Syndrome European Federation (DSEF) is dedicated to improving the lives of affected people through collaboration, education, awareness and facilitating research. Specialist Area Learn more International
International Register of Dravet Syndrome and other syndromes correlated with genes on SCN1A and PCDH19 Specialist Area Learn more
Message from dr. Charlotte Dravet

The patient organizations are very important for support and information, but also to establish fair relations with the physicians.

Improving the lives of people living with Dravet Syndrome

For all its projects, DSEF was awarded by Eurordis the title “Patient Organisation 2017”.



Incidence of Dravet Syndrome in Europe


Patients have motor impairment


DSEF members


Patients represented


  • A new publication on the efficacy of Fenfluramine was issued recently in Epilepsia, acknowledging how the registry RESIDRAS can serve as a useful tool

  • We would like to present to you our new Board of Directors and the new Executive Committee, following elections held at the beginning of May 2020.

  • 23 June 2020 will be the sixth Dravet Awareness Day. On this occasion, patient organisations from around the world will take different actions to rais

  • The long awaited results of “Vaccination in Dravet Syndrome – a European survey” are finally out! Most probably, the fact that only 55% of the patient