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

Sara's story

by Gabry published 6 months ago
One comment

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...

Ollie my beautiful Angel.

by sarahjohnson published about 1 year ago
No comment

This beautiful innocent little Angel Ollie, is the reason I want to continue to raise awareness and money for Dravet Syndrome.
Ollie was the happi...

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.