News and Events

News

  • Families of patients with Dravet syndrome join forces to carry out one of the largest scientific survey ever published for this rare disease.  In an unprecedented study, the Dravet Syndrome Foundation Spain surveyed 274 families from across Europe. One of the most important findings in our study is that 42% of the European patients are taking stiripentol, the only drug ever approved for this syndrome. The whole article is available online, in the journal Epilepsy and Behavior.

 

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  • Dravet Syndrome European Foundation is now member of Eurordis. With 667 direct member organisations, Eurordis is recognised and listened to as the European organisation specialised in the needs of patients with rare diseases.

LOGO Eurordis member RVB

Upcoming Events

  • Horizon For Dravet Syndrome – Istanbul (5-9 September 2015)
  • Special Session Dravet Syndrome – Prague (11-15 September 2016)
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