Dravet Syndrome European Foundation was set up in 2014 by eight organisations in seven countries, aiming to jointly fight for a cure for this terrible disease.
Dravet Syndrome European Federation (DSEF) is a federation of European organisations, active in the field of Dravet Syndrome and driven by patients and patients care givers. Together we have built a strong European community of people living with Dravet Syndrome. We are this community’s voice and, directly or indirectly, we fight against the impact of Dravet Syndrome.
DSEF is a non-profit organisation, founded on 23 May 2014 in Madrid, Spain, and was officially registered in September in Brest, France. Our list of members, the Board of directors and our Statutes can be found on our About us page.
The aims of the DSEF are:
The Board of Directors of DSEF consists of the founding members:
The Board of Directors was elected in 2014 for a three year term by the Ordinary General Meeting. We (virtually) meet at least once every three months.
Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and catastrophic form of intractable epilepsy that begins in infancy. Initial seizures are most often prolonged events and in the second year of life other seizure types begin to emerge. Development remains on track initially, with plateaus and a progressive decline typically beginning in the second year of life. Individuals with Dravet syndrome face a higher incidence of SUDEP (sudden unexplained death in epilepsy) and have associated conditions, which also need to be properly treated and managed. These conditions include:
Children with Dravet syndrome do not outgrow this condition and it affects every aspect of their daily lives.
Unless a cure or better treatments for Dravet syndrome and related epilepsies are found, individuals with these disorders face a diminished quality of life. Current treatment options are extremely limited and the prognosis for these children is poor. The constant care and supervision of an individual with such highly specialized needs is emotionally and financially draining on the family members who care for these individuals.
DSEF can help European countries to set up their own national patients’ organizations, which can then become members of the Federation. Our target is to be a valuable, powerful partner in the European epilepsy field, as together we are stronger.
There are different teams doing seizure tracking devices. These devices are useful for catching seizures at night and for SUDEP.
We are aiming to create a network of expects to be constantly updated to the newest information in the epilepsy and Dravet Syndrome field, so that dissemination can then go further to all those interested.