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

Ollie my beautiful Angel.

by sarahjohnson published 7 months 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...

Our Angel Ally Marie

by 114Ally published about 1 year ago
3 comments

Ally was born seizing, and that's about all I know, she got very sick this spring, she had dangerously low white blood cells, so they changed her s...

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.