25.09.2024
SCN1A-UP! at the end – Gene therapy approaches
In this video, Dr Gaia Colasante summarizes the strategies and......
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24.09.2024
SCN1A-UP! at the end – project outcomes
In the video above, Dr Massimo Mantegazza, the coordinator of......
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23.09.2024The European Epilepsy Congress Rome 2024
The European Epilepsy Congress has shown significant growth in recent......
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30.07.2024Research: Project SCN1A-UP! Therapeutic strategies for Dravet syndrome
The project SCN1A-UP!, coordinated by Dr Massimo Mantegazza and funded......
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18.07.2024New tool to improve quality of life of Dravet patients and their families
The development of more effective support systems and an enhanced......
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19.10.2022SUDEP – An uncomfortable but necessary discussion
SUDEP is that kind of word you don’t want to......
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22.06.2022SUDEP forum at EEC2022 Geneva
Almost all discussions around Dravet Syndrome are uncomfortable but necessary.......
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29.12.2021New Chief Scientific Officer for DSEF
The Dravet Syndrome European Federation is happy to announce the appointment of Luis Miguel Aras as the new Chief Scientific Officer....
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03.12.2021Research up for SCN1A
SCN1A-UP! has been selected among the projects to be funded by the European Joint Programme on Rare Diseases...
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22.06.2021Dravet Syndrome Awareness Day
This year’s Dravet Awareness banner has a record number of patient organizations and is more international than ever: 28 patient organizations from around the g...
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04.05.2021Orphan designation for Lorcaserin in Europe
The Committee for Orphan Medicinal Products (COMP) within the European Medicines Agency (EMA) has recently reviewed positively the application for orphan design...
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03.05.2021Dravet Syndrome – The Polish Family’s Perspective Study
A new publication coming from Poland offers detailed information about Dravet Syndrome population. The survey was conducted on 55 caregivers and considers diffe...
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03.05.2021Dravet Syndrome Ireland joins DSEF
Proud to receive new members - and hopefully also some unicorn power! Dravet Syndrome Ireland, founded only in 2020, has very recently joined Dravet Syndrome Eu...
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03.05.2021Extended access to Fintepla
DSEF representatives and Zogenix team have met recently and discussed about the possibility to extend the availability of the drug to more patients. Thus, the f...
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20.03.2021Information on COVID-19 vaccination
The Scientific Advisory Board of DSEF has formulated their latest recommendations on the COVID-19 vaccination across Dravet Syndrome population....
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09.10.2020New 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...
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29.06.2020New 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....
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17.06.2020Dravet 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 raise awarenes...
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09.06.2020Vaccination – a European Survey
The long awaited results of “Vaccination in Dravet Syndrome – a European survey” are finally out! Most probably, the fact that only 55% of the patients included...
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08.01.2020Epilepsia Journal
Happy to start 2020 with a supplement of Epilepsia dedicated to Dravet Syndrome - Volume 60, Issue S3. Published under the title "Dravet Syndrome and other sodi...
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01.07.2019The fifth Dravet Awareness Day
The fifth Dravet Awareness Day will be held on June 23rd. On this day, patient organisations around the world call attention to the rare “Dravet Syndrome”. Peop...
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28.06.2019Different Faces of Dravet Syndrome
Dravet Croatia is organising its first conference about Dravet Syndrome. The event will cover, in plenary sessions and round tables, several major topics such a...
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16.06.2019DSUK Conference 2019
Bookings are now open for the upcoming DSUK conference in November, and you are welcome to join us on either Professional Day or Parent/Carer Day. Please check ...
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04.06.2019Platform Residras closer to its goal of 1,000 Dravet patients
We are happy to announce that Dravet Romania is the latest European association to agree to join Platform Residras. Dravet Syndrome European Federation, Stricht...
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24.04.2019New research project jointly supported by 6 European associations
A new research which has just been funded by the Italian charity Gruppo Famiglie Dravet Onlus, supported by five other European associations dedicated to Dravet...
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26.07.2018Drug development for Dravet Syndrome
Did you know there are 14 developing therapies to treat Dravet Syndrome? And that several of the therapies do not seek only to control epileptic seizures but to...
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26.06.2018Election of Julian Isla as member of the European Orphan Drug Committee
On 18th June the European Commission appointed members representing patients’ organisation to the Committee for Orphan Medicinal Products (COMP) of the European...
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20.06.2018New funding for Dravet Syndrome
We are very happy to announce that the Deutsche Forschungsgemeinschaft (DFG – German Research Foundation), a German research funding organization financed by th...
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11.05.2018SUDEP Awareness Day
Sudden Unexpected Death in Epilepsy – SUDEP – is a rare event and refers to a death in a person with epilepsy in which there is no other clear cause of death (s...
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13.01.2018Eurordis Patient Organisation 2017
For all its projects, Dravet Syndrome European Foundation was awarded by Eurordis the title “Patient Organisation 2017”. DSEF became member of Eurordis in 2015....
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11.01.2018EPAG – EPICARE Network
The EpiCARE network would develop and deliver highly-specialized diagnostics and care to improve interventions and outcome in individuals with rare and complex ...
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