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

What is wrong with me?

by ElinFiona published 1 day ago
One comment

Have you ever felt a vacuum moving through your arms and legs, like your inner skin are ripped off? This happened to me January 2016. It was extrem...

FLAVIA'S STORY

by RareConnect team published 6 months ago
No comment

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...

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.