New funding for Dravet Syndrome

New 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 the German states and the federal government, has granted several millions of Euros to a large research project Read more

DISCUSS Survey – results

DISCUSS Survey – results
The DISCUSS survey results are officially published in the journal Developmental Medicine and Child Neurology as of January 2018 (with an early access to the online version: Quality of life and comorbidities associated with Dravet Syndrome severity: a multinational cohort survey). Moreover, Read more

Survey on falls in epilepsy

Survey on falls in epilepsy
UPDATE: The preliminary data on the incidence of falls in epilepsy is presented here. The data aims to encourage study on the new systems of protection. If you have not yet completed the survey we would like to invite you to Read more

Biobanks map

Biobanks map
The terms biobank or biorepository  refer to a structured collection of biological samples stored for the purposes of  present and future researches. The biobank operates according to ethical, legal and quality standards with the aim to collect, process, store and Read more

EPAG – EPICARE Network

EPAG – 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 epilepsies. The EpiCARE group, coordinated by Prof. Helen Cross from Great Ormond Street Hospital for Children (GOSH), has been recognised as Read more

SUDEP

SUDEP
Dravet Syndrome is characterised by high epilepsy-related premature mortality and a marked young age at death. Sudden Unexpected Death in Epilepsy (SUDEP) is the leading reported cause of death in Dravet syndrome, accounting for nearly half of all deaths[1]. DSEF Read more

Gait impairment

Gait impairment
One of the characteristics of Dravet Syndrome is the progressive impairment of gait and consequently reduced functional mobility of patients. On the long term, most patients maintain the ability to walk, but for longer distances they must rely on wheel-chair Read more

Future Age H2020

Future Age H2020
The scientific study Future Age H2020 designs and develops a personal protection system based on an air bag, which can give an effective response to the consequences of tumbles. Future Age H2020 will act protecting the most sensitive parts of Read more

Horizons For Dravet Syndrome

Horizons For Dravet Syndrome
This yearly round table is organized by Dravet Italia Onlus on behalf of the Dravet Syndrome European Federation, reuniting doctors, researchers and patient organizations. #4 edition is scheduled for March 15-16, 2018, to be held in Verona, Italy, with the theme: "Dravet Syndrome Read more