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. Since then, it has continued to support the birth of new local organisations and thus has gained new members.
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.
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.
The Scientific Advisory Board was formed in June 2016 and had its first reunion in September 2016 in Prague. It is formed by experts with proven and established expertise, highly qualified, and is in charge for five years.
– Myra De Groot, member of the board DSEF
One of the aims of DSEF is to stimulate research and development into treatments by specialist physicians and researchers.Read more
These projects target to improve the quality of life of patients and their family caregivers by promoting and developing medical/social initiatives.Read more
Other projects of DSEF aim to raise funds for medical and social research, and also to raise awareness of Dravet Syndrome among the public and the medical/social community.Read more
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.