Dravet Syndrome European Federation

 

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.

About us

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.

federation_evolution

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.

What are our aims?

  • 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.

Board of Directors (2017-2020):

In May 2017 a new Board of Directors of the DSEF was elected, for a three year term, while in June 2017 a new executive committee was also put in place.

  • Julian Isla, Dravet Syndrome Foundation – Delegation en Espana (Spain), chairman
  • Isabella Brambilla, Dravet Italia Onlus (Italy), deputy chairman
  • Renata Heusser, Swiss Dravet Syndrome Association (Switzerland), secretary
  • Simona Borroni, Gruppo Famiglie Dravet Onlus (Italy), treasurer
  • Myra de Groot, Stichting Dravetsyndroom Nederland/Vlaanderen (Netherlands/Belgium), member of the Board
  • Galia Wilson, Dravet Syndrome UK (Great-Brittain), member of the Board
  • Karin Jibaja (Netherlands) assistant of the Board of Directors

The Board of Directors (virtually) meets once a month. All members are invited to a video conference every three months.

Additional members:

  • Alliance Syndrome de Dravet (France) – since 2014
  • Dravet-Syndrom e.V. (Germany) – since 2014
  • Asociatia pentru Dravet si alte Epilepsii Rare (Romania) – since 2014
  • 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

Scientific Advisory Board of Dravet Syndrome European Federation:

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.

Experts present, doctor/scientist:

– Dr. Helen Cross
– Dr. Rima Nabbout
– Prof. Bernardo Dalla Bernardina
– Prof. Renzo Guerrini
– Dr. Liven Lagae
– Dr. Antonio Gil-Nagel
– Dr. Ana Mingorance

Representing the DSEF:

– Julian Isla, president of DSEF
– Isabella Brambilla, vice-president of DSEF
– Myra De Groot, member of the board DSEF

Its main tasks:

– to support the actions of DSEF;
– to operate and advise in particular with regard to aspects of a medical, clinical, for those related to the research;
– to operate and propose in addition to the aspects / initiatives related to better functional and organizational quality of healthcare services provided to patients.

Does your organisation want to also contribute to our aims and projects?

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

More info

Information and joining us

Our Projects

Scientific projects

Scientific projects

One of the aims of DSEF is to stimulate research and development into treatments by specialist physicians and researchers.

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Improvement of life

Improvement of life

These projects target to improve the quality of life of patients and their family caregivers by promoting and developing medical/social initiatives.

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Awareness & Fundraising

Awareness & Fundraising

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

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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