Dravet Syndrome
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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
Information on COVID-19 vaccination
The Scientific Advisory Board of DSEF has formulated their latest recommendations on the COVID-19 vaccination across Dravet Syndrome population.
20 March, 2021New study on Fenfluramine using Residras registry
A new publication on the efficacy of Fenfluramine was issued recently in Epilepsia, acknowledging how the registry RESIDRAS can serve as a useful tool
09 October, 2020New Board of Directors
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.
29 June, 2020Dravet Awareness Day 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
17 June, 2020
Collaborations
