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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

Feb
21
Wed
6:00 pm Surgical Epilepsy Case Discussio... @ Online
Surgical Epilepsy Case Discussio... @ Online
Feb 21 @ 6:00 pm
Please note the timezone for this event is CET
Feb
27
Tue
all-day 9th European SEEG Course C.E.T Time @ Venice, Italy
9th European SEEG Course C.E.T Time @ Venice, Italy
Feb 27 – Mar 3 all-day
For more information, please click here. Further information can also be obtained from: SEEG COURSE SECRETARIAT – ANT CONGRES 154 avenue de Lodève 34070 Montpellier /FRANCE Phone[...]
2:00 pm OpenApp ERN CPMS Training @ Online
OpenApp ERN CPMS Training @ Online
Feb 27 @ 2:00 pm
Q&A interactive webinar to address any questions from all ERNs – Register HERE – OpenApp will compile a list of the most frequently asked questions[...]
Mar
7
Wed
all-day RE(ACT) International Congress O... @ Bologna, Italy
RE(ACT) International Congress O... @ Bologna, Italy
Mar 7 – Mar 10 all-day
Website: https://www.react-congress.org/
Mar
15
Thu
all-day International Symposium “Dravet ... @ Palazzo Della Gran Guardia
International Symposium “Dravet ... @ Palazzo Della Gran Guardia
Mar 15 – Mar 16 all-day
Dear friends and colleagues, On the occasion of 40 years since Dravet Syndrome was first defined, and 8 years after organizing the first Workshop in[...]
Mar
28
Wed
6:00 pm Surgical Epilepsy Case Discussio... @ Online
Surgical Epilepsy Case Discussio... @ Online
Mar 28 @ 6:00 pm
Please note the timezone for this event is CET
Apr
4
Wed
all-day EEG in the First Two Years of Life @ Clare College
EEG in the First Two Years of Life @ Clare College
Apr 4 – Apr 7 all-day
Comprehensive ILAE teaching course with an emphasis on interactive and practical sessions, in Cambridge’s second oldest college. This is a 3 ½ day residential EEG[...]

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