Welcome - Dravet Syndrome Community

What is Dravet Syndrome ?

Dravet Syndrome is one of the most catastrophic epilepsies and is a rare neurological condition causing severe, difficult to control seizures alongside developmental delay. 

Source: Participating patient organizations visible below

Dravet Syndrome Resources

More members stories

Latest Member Stories


by RareConnect team published 9 months ago
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I had a difficult birth and a long labor, but this also happened with my first daughter, there was nothing strange in that... finally Flavia was bo...

Sara's story

by Gabry published 9 months ago

Sara was born on 16 January 2013 at 4.15 a.m. I was 22 and she was my second child; at home her brother Amir, who was 22 months old, was waiting fo...

Partners and Patient Groups

RareConnect is a patient-led initiative. Patient organisations partner with EURORDIS, itself an international patient organisation, to create communities and provide moderators from within their network. The following patient groups are official partners of this community.