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EpiCARE: a European Reference Network for rare and complex epilepsies

The epilepsies are a group of disorders where individuals are prone to recurrent epileptic seizures. Rare epilepsies affect less than 5 people in 10,000 of the general population and are either defined as an epilepsy syndrome or seizures as the result of a specific cause.

Advances in brain scanning as well as genetic and metabolic investigations have determined an increasing number of causes behind epileptic seizures, resulting in the description of more than 130 rare diseases.

EpiCARE brings together 28 highly specialized health centres in 13 European countries with expertise in rare and complex epilepsies. EpiCARE offers a coordinated approach for epilepsy diagnostics and treatment by utilizing e-tools and cross-country e-consultancy, thus providing patients with the best expertise available.

Capitalizing on the large spectrum of diagnostic and treatment modalities as well as on the individual expertise of our centres in the field of rare and complex epilepsies, EpiCARE members are working together to create significant added value for patient care, research, education and training in close collaboration with patient organisations.

If you are a healthcare professional and would like to refer a patient to us, or if you are a patient yourself, or a family member of a patient, please get in touch via email or via our contact page.

The objectives of the EpiCARE network

  1. To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation.
  2. To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies.
  3. To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment.
  4. To enhance educational activities and training opportunities across Europe by interchange across the network.
  5. To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.

European Reference Networks (ERN)

European Reference Networks (ERN) are virtual networks involving specialist healthcare providers across Europe. They aim to tackle complex or rare medical diseases or conditions that require highly specialised treatment and a concentration of knowledge and resources. The ERNs are part of a broader EU strategy to make the national and European health systems more efficient, accessible and resilient.

The European Reference Network EpiCARE includes 28 centres from 13 member states:

Upcoming Events

May
10
Thu
all-day 9th European Conference on Rare ... @ Messe Wien Congress Center
9th European Conference on Rare ... @ Messe Wien Congress Center
May 10 – May 12 all-day
ECRD – the European Conference on Rare Diseases & Orphan Products is the largest multi-stakeholder gathering in Europe for the rare disease community covering research, development of new treatments,[...]
May
23
Wed
all-day epiXchange Conference @ Brussels
epiXchange Conference @ Brussels
May 23 all-day
epiXchange brings together the excellence of epilepsy research in Europe for a conference in Brussels on 23 May 2018. The main goal is to showcase[...]
all-day epiXchange: A Community Building... @ The EGG in Brussels, Belgium
epiXchange: A Community Building... @ The EGG in Brussels, Belgium
May 23 all-day
The epiXchange Scientific Organising Committee is pleased to inform you that registration to the scientific conference “epiXchange: A community building event for epilepsy research” is[...]
May
24
Thu
all-day 15th Colloquium Neurologicum @Sa...
15th Colloquium Neurologicum @Sa...
May 24 – May 25 all-day
Endorsed meeting on Rare Neurological Disorders and Rare Epilepsies taking place in Salzburg on Thursday 24th May and Friday 25th May 2018.
May
30
Wed
6:00 pm Surgical Epilepsy Case Discussio... @ Online
Surgical Epilepsy Case Discussio... @ Online
May 30 @ 6:00 pm
Please note the timezone for this event is CET
May
31
Thu
8:00 pm ePAG Meeting via WebEx C.E.T Time @ Online
ePAG Meeting via WebEx C.E.T Time @ Online
May 31 @ 8:00 pm
Bi-monthly patient panel meeting for EpiCARE.
Jun
11
Mon
all-day Expert Patient and Researcher EU... @ Barcelona
Expert Patient and Researcher EU... @ Barcelona
Jun 11 – Jun 15 all-day
Patients are taking on ever increasing roles in advocating for medicines development, equal access to treatments across Europe and ensuring that medical information is clear,[...]

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