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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

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,[...]
Jun
19
Tue
all-day Annual Ketocollege, Matthew’s Fr... @ West Sussex, UK
Annual Ketocollege, Matthew’s Fr... @ West Sussex, UK
Jun 19 – Jun 21 all-day
MATTHEW’S FRIENDS WILL BE HOSTING THEIR ANNUAL KETOCOLLEGE PROGRAMME 19TH – 21ST JUNE 2018 – CROWNE PLAZA FELBRIDGE HOTEL, EAST GRINSTEAD, WEST SUSSEX, UK For[...]
Jun
22
Fri
all-day 2nd European Glut 1D Conference ...
2nd European Glut 1D Conference ...
Jun 22 – Jun 23 all-day
Following on from the First European Conference on GLUT1 Deficiency that was held in Milan in 2016, we continue with our biennial developmental programme of[...]
Jun
27
Wed
6:00 pm Surgical Epilepsy Case Discussio... @ Online
Surgical Epilepsy Case Discussio... @ Online
Jun 27 @ 6:00 pm
Please note the timezone for this event is CET
Jul
25
Wed
6:00 pm Surgical Epilepsy Case Discussio... @ Online
Surgical Epilepsy Case Discussio... @ Online
Jul 25 @ 6:00 pm
Please note the timezone for this event is CET
Jul
26
Thu
all-day 8th Intl Summer School for Neuro... @ Erlangen
8th Intl Summer School for Neuro... @ Erlangen
Jul 26 – Jul 29 all-day
Workshop Description The 8th International Summer School for Neuropathology and Epilepsy Surgery will be designed to enable participants to better recognize and classify various histopathological[...]

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