Dravet Syndrome European Federation

 

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Our Vision

A life without Seizures.

Our Mission

The Dravet Syndrome European Federation (DSEF) is dedicated to finding a cure for Dravet Syndrome through funding research and to save lives by increasing awareness and early detection.

Our Motto

Alone we are strong, together we are stronger.

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.

Who are we?

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.

What are our aims?

The aims of the DSEF are:

  • To improve the quality of life of patients and their family caregivers by promoting and developing medical/social initiatives.
  • To stimulate research and development into treatments by specialist physicians and researchers.
  • To raise funds for medical and social research.
  • To raise awareness of Dravet Syndrome among the public and the medical/social community.
  • To help countries without a local Dravet Syndrome association to form their own association.

Does your organisation want to contribute to these aims?

Then let’s join forces. We can achieve much more together!

Make a donation...

if you would like to support our projects!

About us

Board of Directors

The Board of Directors of DSEF consists of the founding members:

  • Alliance Syndrome de Dravet (France)
  • Dravet-Syndrom e.V. (Germany)
  • Dravet Italia Onlus and Gruppo Famiglie Dravet Onlus (both from Italy)
  • Stichting Dravetsyndroom Nederland/Vlaanderen (Netherlands/Belgium)
  • Asociatia pentru Dravet si alte Epilepsii Rare (Romania)
  • Dravet Syndrome Foundation – Delegation en Espana (Spain)
  • Swiss Dravet Syndrome Association (Switzerland)

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.

Additional members:

  • Dravet sindrom Hrvatska (Croatia) – since 2015
  • Associação Síndrome de Dravet (Portugal) – since 2015
  • Dravet Syndrome (UK) – since 2016
  • Dravet.Pl (Poland) – since 2016
  • Dravets Syndrome Association Sweden – since 2016
  • dravet-syndrome.at (Austria) – since 2016

Supporters:

  • Cyprus Epilepsy Association – since 2016

Meet the Executive Committee

  • Julian Isla, chairman
  • Isabella Brambilla, deputy chairman
  • Adelaide Maillard, secretary
  • Simona Borroni, treasurer
 

More info

Information and joining us

Dravet Syndrome

What is Dravet Syndrome

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:

  • behavioral and developmental delays
  • movement and balance issues
  • orthopedic conditions
  • delayed language and speech issues
  • growth and nutrition issues
  • sleeping difficulties
  • chronic infections
  • sensory integration disorders
  • disruptions of the autonomic nervous system (which regulates things such as body temperature and sweating)

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.

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