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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
22
Fri
1:00 pm Registry Meeting GMT Time @ DRIVE meeting room (40 Bernard St, London WC1N 1LE)
Registry Meeting GMT Time @ DRIVE meeting room (40 Bernard St, London WC1N 1LE)
Feb 22 @ 1:00 pm – 3:00 pm
 
1:00 pm WP10 – Ketogenic diet expert gro... @ Masters Suite – Holiday Inn Bloomsbury, London, First floor meeting area
WP10 – Ketogenic diet expert gro... @ Masters Suite – Holiday Inn Bloomsbury, London, First floor meeting area
Feb 22 @ 1:00 pm – 3:00 pm
(max 12 people)
1:00 pm WP3 – Neuroimaging expert group ... @ Rosette Suite - Holiday Inn Bloomsbury, London, First floor meeting area
WP3 – Neuroimaging expert group ... @ Rosette Suite - Holiday Inn Bloomsbury, London, First floor meeting area
Feb 22 @ 1:00 pm – 3:00 pm
(max 12 people)
1:00 pm WP4 – Neurophysiology expert gro... @ Turner Suite – Holiday Inn Bloomsbury, London, Ground floor
WP4 – Neurophysiology expert gro... @ Turner Suite – Holiday Inn Bloomsbury, London, Ground floor
Feb 22 @ 1:00 pm – 3:00 pm
(max 25 people)
3:00 pm EPAG meeting GMT Time @ PUW2 seminar room, Institute of Child Health
EPAG meeting GMT Time @ PUW2 seminar room, Institute of Child Health
Feb 22 @ 3:00 pm – 5:00 pm
 
3:00 pm WP7 – Targeted medical therapies... @ Turner Suite – Holiday Inn Bloomsbury, London, Ground floor
WP7 – Targeted medical therapies... @ Turner Suite – Holiday Inn Bloomsbury, London, Ground floor
Feb 22 @ 3:00 pm – 5:00 pm
(max 25 people)
3:00 pm WP8 Epilepsy Surgery (E-pilepsy)... @ Masters Suite – Holiday Inn Bloomsbury, London, First floor meeting area
WP8 Epilepsy Surgery (E-pilepsy)... @ Masters Suite – Holiday Inn Bloomsbury, London, First floor meeting area
Feb 22 @ 3:00 pm – 5:00 pm
(max 12 people)
3:00 pm WP9 – Neonatal seizures expert g... @ Rosette Suite - Holiday Inn Bloomsbury, London, First floor meeting area
WP9 – Neonatal seizures expert g... @ Rosette Suite - Holiday Inn Bloomsbury, London, First floor meeting area
Feb 22 @ 3:00 pm – 5:00 pm
(max 12 people)

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