The European Reference Network (ERN) EpiCARE is composed of hospital-based health care professionals with a high level of expertise in diagnosis and treatment of rare and complex epilepsies, accredited by their respective national health authorities and the European Commission.
By sharing its expertise and advice on state-of-the-art practices with all EU-based medical teams, national reference networks and beyond, the ERN EpiCARE aims at improving accessibility of detailed diagnostics and treatment suggestions to individuals of all ages with rare and complex epilepsies across Europe, also fostering research and innovation. In parallel, the development of a close and sustainable partnership with patient advocates (ePAG) for a better-structured and accessible to all Europeans healthcare system, is a priority.
Professor Alexis Arzimanoglou
The European Reference Network for rare and complex epilepsies, ERN EpiCARE, is coordinated since 2019 by Pr. Alexis Arzimanoglou, currently Director of the Epilepsy Program at the San Juan de Dios Children’s University Hospital in Barcelona, Spain; From 2008 to 2023 he worked as Head of the Paediatric Clinical Epileptology, Sleep Disorders and Functional Neurology Dpt. at the Hospices Civils de Lyon, France.
His clinical and research activities mainly focus on the pharmacological and surgical management and genetics of childhood epilepsies and topics related to cognitive function and dysfunction in children with focal epilepsies. Alexis has served as President of the French chapter of the International League Against Epilepsy (ILAE), Chair of the Scientific Committee of the European Paediatric Neurology Society (EPNS), member of several ILAE task forces and twice elected member of the ILAE-Europe Executive Board (2009-2013; 2022-…). He is also the founder and currently Editor-in-chief Emeritus of the educational journal of the ILAE, Epileptic Disorders and Associate Editor of the European Journal of Paediatric Neurology.
Professor Arzimanoglou received the ILAE/IBE Ambassador Award for Epilepsy in 2007, the EPNS “Aicardi Award for excellence in Paediatric Neurology” in 2017 and the ILAE European Epilepsy Education Award in 2022.
Vilnius, March 10th, 2017 – The founding steering committee launching the ERN EpiCARE under the leadership of Pr. Helen Cross (UK).
Patient representatives:
Guidelines and Education Manager
Joint Action JARDIN Manager
Helpdesk
ANT Congrès
CPMS & Patient Empowerment Manager
Communication Manager
Research Manager
Administrative and Finances Manager
Registry and Data Manager
ERN EpiCARE Terms of Reference and Terms of Engagement, first presented at the General Assembly of members (February 18th, 2022), validated, in their updated 2024 version, by the Executive Committee the 8th of October 2024 and reported at the Board of Network Members the 13th of November 2024.
| Centre | Country | City | Lead |
|---|---|---|---|
| University Hospital Centre SestreMilosrdnice – KliničkibolničkicentarSestremilosrdnice | Croatia | Zagreb | Pr. Maša Malenica |
| Department of Neurology, School of Medicine, University Hospital Centre Zagreb | Croatia | Zagreb | Pr. Željka Petelin Gadže |
| The Cyprus Foundation For Muscular Dystrophy Research / Cyprus Institute of Neurology and Genetics | Cyprus | Nicosia | Pr. Andreas Koupparis |
| Rigshospitalet and Danish Epilepsy Center Filadelfia Consortium • Epilepsiklinikken, Rigshospitalet-Blegdamsvej (Pr. Anna Sabers) • Filadelfia Danish Epilepsy Center, Dianalund (Pr. Guido Rubboli) | Denmark | Copenhagen | Pr. Anna Sabers and Pr. Guido Rubboli |
| Aarhus Universitets hospital | Denmark | Aarhus | Assoc. Prof Jakob Christensen |
| Tartu University Hospital | Estonia | Tartu | Dr. Ulvi Vaher |
| Tallin Children’s Hospital | Estonia | Tallin | Dr. Inga Talvik |
| University Children’s Clinical Hospital – Bērnu klīniskā universitātes slimnīca | Latvia | Riga | Dr. Jurģis Strautmanis |
| Hospital of the Lithuanian University of Health Sciences Kaunoklinikos | Lithuania | Kaunas | Giedre Gelziniene |
| Department of Neurology, Institute of Clinical Medicine, Faculty of Medicine, Vilnius University | Lithuania | Vilnius | Pr. Ruta Mameniskiene |
| Centre Hospitalier de Luxembourg | Luxembourg | Luxembourg | Dr. Martine Goergen |
| MALTA Mater Dei Hospital | Malta | Msida | Dr. James Clark |
| Centre | Country | City | Lead |
| Department of Epileptology and Epilepsy Surgery CHU Grenoble | France | Grenoble | Pr. Philippe Kahane |
| Paris Brain Institute – Institut du Cerveau – ICM | France | Paris | Dr. Stéphanie Baulac |
| Greek Rare Epilepsies Consortium (GREC), Attikon, Athens and St. Luke’s, Thessaloniki Hospitals | Greece | Athens | Pr. A. Dinopoulos and Dr. K. Garganis |
| Infant Research Centre | Ireland | Cork | Pr. Geraldine Boylan |
| Beaumont Hospital | Ireland | Dublin | Dr. Norman Delanty |
| Centre Hospitalier Universitaire Vaudois | Switzerland | Lausanne | Pr. Philippe Ryvlin |
| Queen Elizabeth Hospital Birmingham | United Kingdom | Birmingham | Dr. Shanika Samarasekera |
| Queen Elizabeth University Hospital | United Kingdom | Glasgow | Pr. Sameer Zuberi |
| Great Ormond Street Hospital for Children NHS Trust | United Kingdom | London | Pr. J. Helen Cross |
| University College London Hospitals NHS Foundation Trust | United Kingdom | London | Pr. Matthew Walker |
| Oxford University Hospitals NHS Foundation Trust | United Kingdom | Oxford | Dr. Arjune Sen |
| Epilepsy Department, St. Ivan Rilski University Hospital | Bulgaria | Sofia | Dr. Petia Dimova |
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Funding
The ERN EpiCARE was created in 2017 and is funded by the European Union.
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