Dravet Awareness Day

Dravet Awareness Day 2020

The sixth Dravet Awareness Day is getting really close!

23 June 2020 will be the sixth Dravet Awareness Day. On this occasion, patient organisations from around the world will take different actions to raise awareness for this rare disease. While the number of people affected by Dravet Syndrome remains unknown, it is generally accepted that in Europe they represent 1:22,000.

The cause of Dravet Syndrome is a genetic mutation. This usually originates with the patient, not passed on by the parents. The first symptoms are severe epileptic seizures that start at baby age. Patients with Dravet Syndrome continue to suffer from epilepsy throughout their lives.

The seizures are sometimes life threatening and can result in a status epilepticus (that is very difficult to stop). Sudden death (SUDEP) is also a risk that comes with Dravet Syndrome. Together with the other problems, this has a huge impact on families living with this disease.

About 17 percent of Dravet patients die before adulthood is reached.