Drug development for Dravet Syndrome
Did you know there are 14 developing therapies to treat Dravet Syndrome? And that several of the therapies do not seek only to control epileptic seizures but to correct the…
Dravet Syndrome European Federation
Our Vision
About us
Dravet Syndrome European Foundation (DSEF) is a non-profit organisation, a federation of European organisations, active in the field of Dravet Syndrome and driven by patients and patients’ caregivers. 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 was founded in 2014 by eight organisations, 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.
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 2017 a new Board of Directors of the DSEF was elected, for a three year term and a new executive committee was put in place.
- Isabella Brambilla, Dravet Italia Onlus, Chairman
- Myra de Groot, Stichting Dravetsyndroom Nederland/Vlaanderen (Netherlands/Belgium), Deputy Chairman
- Renata Heusser Jungman, Swiss Dravet Syndrome Association (Switzerland), Secretary
- Simona Borroni, Gruppo Famiglie Dravet Onlus (Italy), Treasurer
- Galia Wilson, Dravet Syndrome UK (United Kingdom), Member of the Board
- Anne Sophie Hallet, Alliance Syndrome de Dravet (France), Member of the Board
The Board of Directors (virtually) meets once a month. All members are invited to a video conference every three months. Karin Jibaja from the Netherlands is Assistant of the Board of Directors.
Members
Alliance Syndrome de Dravet (France) – since 2014
Apoyo Dravet (Spain) – since 2018
Associação Síndrome de Dravet (Portugal) – since 2015
Dravet Italia Onlus (Italy) – since 2014
Dravet.Pl (Poland) – since 2016
Dravet sindrom Hrvatska (Croatia) – since 2015
Dravet-Syndrom e.V. (Germany) – since 2014
Dravet Syndrome UK (United Kingdom) – since 2016
Dravets Syndrome Association Sweden – since 2016
Dravet syndrom Norge (Norway) – since 2017
Fundación Síndrome de Dravet (Spain) – since 2014
Gruppo Famiglie Dravet Onlus (Italy) – since 2014
Dravet Sindrom Srbija – since 2018
Swiss Dravet Syndrome Association (Switzerland) – since 2014
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.
Physicians/scientists
– Dr. Helen Cross
– Dr. Rima Nabbout
– Prof. Bernardo Dalla Bernardina
– Prof. Renzo Guerrini
– Dr. Lieven Lagae
– Dr. Antonio Gil-Nagel
– Dr. Ana Mingorance
Representing the DSEF
– Isabella Brambilla, Chairman, DSEF
– Myra De Groot, Deputy Chairman, DSEF
– Julian Isla, Chief Scientific Officer, 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!
News
We are happy to announce that we will hold a Symposium on ‘Diagnosis and management of Dravet Syndrome – From unmet medical needs to best practices’ during the European Congress… On 18th June the European Commission appointed members representing patients’ organisation to the Committee for Orphan Medicinal Products (COMP) of the European Medicines Agency (EMA). We are very happy that…
Our Symposium at the ECE in Vienna
Election of Julian Isla as member of the European Orphan Drug Committee
Want to contribute to our aims and projects?
Let’s join forces. Together we can achieve much more!
Our Projects
Scientific projects
One of the aims of DSEF is to stimulate research and development into treatments by specialist physicians and researchers.
Read more
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.
Read more
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 moreDravet 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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Contact
Please send an email to info@dravet.eu in order to get in touch with us. We will contact you as soon as possible.
Recommended links
Treatments & clinical trials
Fenfluramine Assessment in Rare Epilepsy (FAiRE)
GW’s Epidiolex Clinical Program
Diacomit
Medical care
Awareness
Dravet Syndrome Awareness Day
Rare Disease Day
Patient organisations outside Europe
Dravet Syndrome Foundation (USA)
Dravet Canada
Dravet Syndrome JP (Japan)