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 correct the genetic defect?
Progress on the treatment of Dravet Syndrome in recent Read more
Our Symposium at the ECE in Vienna
We are happy to announce that we will hold a Symposium on 'Diagnosis and management of Dravet Syndrome - From unmet medical needs to best practices' during the European Congress on Epileptology (ECE) in Vienna.
For more information on the 5th Read more
Election 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 Medicines Agency (EMA).
We are very happy that Julian Isla, our Chief Scientific Officer, has been appointed and as Read more
New 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 Syndrome: Associaçào Sindrome de Dravet Portugal, Dravet-Syndrom e.V Germany, Dravet Syndrome Sweden Association, Stichting Dravetsyndroom Read more
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).
More Read more