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
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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”.

DRAVET SYNDROME IN NUMBERS:

1:22,000

Incidence of Dravet Syndrome in Europe

72%

Patients have motor impairment

17

DSEF members

1,500

Patients represented

News

  • The Committee for Orphan Medicinal Products (COMP) within the European Medicines Agency (EMA) has recently reviewed positively the application for orp

  • A new publication coming from Poland offers detailed information about Dravet Syndrome population. The survey was conducted on 55 caregivers and consi

  • Proud to receive new members - and hopefully also some unicorn power! Dravet Syndrome Ireland, founded only in 2020, has very recently joined Dravet S

  • DSEF representatives and Zogenix team have met recently and discussed about the possibility to extend the availability of the drug to more patients. T

Collaborations