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EpiCARE: a European Reference Network for rare and complex epilepsies

The European Reference Networks (ERNs) were launched in 2017. They involve more than 900 highly specialised health care teams, located in more than 300 hospitals in 26 European countries. The main mission of the ERNs is to help patients with rare or low-prevalence complex diseases.

A disease is defined as rare when it affects fewer than one in 2 000 people, is serious, chronic and often life-threatening. Between 5 000 and 8 000 of rare diseases affect daily life of around 30 million people in the EU.

The ERN EpiCARE brings together highly specialized health centres (28 full members and 15 affiliated partners) in 24 European countries with expertise in rare and complex epilepsies. The centers closely collaborate with the scientific societies (ILAE, EAN, EPNS, Epilepsy Alliance Europe) and a number of other epilepsy teams in the EU with expertise in specific domains. EpiCARE offers a coordinated approach for epilepsy diagnostics and treatment by using e-tools and cross-country e-consultancy. Currently, EpiCARE epilepsy teams meet online or face-to-face to discuss cases. They also try to identify the best specific treatment, share good practices and experience, develop research projects, and organize trainings. Bringing actors of the field closer, they provide patients, their families and physicians with the best expertise available. (More explanation on this short video produced by the EU – click here).

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 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.

    You will find on this website

  • Information about EpiCARE, a European Reference Network for rare and complex epilepsies
  • Information about our work in the fields of epilepsy diagnosis, treatment, research, education and training
  • Information about patient associations active in the field of rare and complex epilepsies
  • Contact information for patients and physicians

The European Reference Network EpiCARE includes
28 full members and 15 affiliated partners in 24 countries

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.

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