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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

all-day 13th European Congress on Epilep... @ Vienna, Austria
13th European Congress on Epilep... @ Vienna, Austria
Aug 26 – Aug 30 all-day
all-day The 13th International Conferenc... @ Stockholm, Sweden
The 13th International Conferenc... @ Stockholm, Sweden
Sep 19 – Sep 20 all-day
For more information about ICORD and previous annual meetings please visit the ICORD website. FULFILLED AND UNMET NEEDS OF RARE DISEASES ICORD is an International[...]
6:00 pm Surgical Epilepsy Case Discussio... @ Online
Surgical Epilepsy Case Discussio... @ Online
Sep 26 @ 6:00 pm
Please note the timezone for this event is CET
8:00 pm ePAG Meeting via WebEx C.E.T Time @ Online
ePAG Meeting via WebEx C.E.T Time @ Online
Sep 27 @ 8:00 pm
Bi-monthly patient panel meeting for EpiCARE. Just to confirm our next EPAG WebEx meeting will now be on Tue 31st Jul 7-9pm UKT (8-10pm CET)

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