Members of EpiCARE
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.
Coordination
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).
ERN EpiCARE Executive Committee
Arzimanoglou Alexis (Spain) Barba Carmen (Italy)
Beniczky Sandor (Denmark)
Blümcke Ingmar (Germany)
Braun Kees (The Netherlands) Cross Helen (UK) Helmstaedter Christoph (Germany)
Kalviainen Reetta (Finland) Kotulska Jóźwiak Kasia (Poland) Jansen Floor (The Netherlands)
Lagae Lieven (Belgium) Lesca Gaetan (France)
Lossius Morten Ingvar (Norway)
Malenica Maša (Croatia)
Marusič Petr (Czech Republic)
Nabbout Rima (France)
Pressler Ronit (UK)
Rubboli Guido (Denmark)
Ryvlin Philippe (Switzerland)
Specchio Nicola (Italy)
Trinka Eugen (Austria)
Vigevano Federico (Italy)
Patient representatives:
Brambilla Isabella (Italy)
Irena Bibic (Croatia)
Project management team
Martin Geroldinger (Austria)
Guidelines and Education Manager
Anne Robert (France)
Joint Action JARDIN Manager
Clotilde Guérineau (France)
Helpdesk
ANT Congrès
Nicola Openshaw-Lawrence (UK)
CPMS & Patient Empowerment Manager
Laura Roig (Spain)
Communication Manager
Sébile Tchaicha (France)
Research Manager
Belén Trebino Harrington (Spain)
Administrative and Finances Manager
Johanna Van Hulle (Belgium)
Registry and Data Manager
Terms of Reference & Terms of Engagement
ERN EpiCARE Terms of Reference and Terms of Engagement, presented at the General Assembly of members (February 18th, 2022) and voted in their final version by the Executive Committee on March 9th, 2022
Full members
Affiliated members
| 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 |
Supporting partners
| Centre | Country | City | Lead |
|---|---|---|---|
| Department of Epileptology and Epilepsy Surgery CHU Grenoble | France | Grenoble | Pr. Philippe Kahane |
| 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 |
