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

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Our Mission

The Dravet Syndrome European Federation (DSEF) is dedicated to improving the lives of affected people through collaboration, education, awareness and facilitating research.

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International
Register

International Register of Dravet Syndrome and other syndromes correlated with genes on SCN1A and PCDH19

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DSEF
Members

Registry Platform – Residras

Research Projects

Events

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

2025 is a great year for Dravet drug research. Learn what’s ahead!
We live in a very interesting period for Dravet Syndrome,...
DSEF
24 March, 2025
Find Clinical Trials near you with new Interactive Map
The European Medicines Agency (EMA) has recently launched a new...
DSEF
29 March, 2025
Phase 3 of Zorevunersen Study
Stoke Therapeutics, a biotechnology company that works on a proposed...
DSEF
09 January, 2025
SCN1A-UP! at the end – Gene therapy approaches
In this video, Dr Gaia Colasante summarizes the strategies and...
DSEF
25 September, 2024