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
EpiCARE is coordinated by Pr. Alexis Arzimanoglou, Honorary Consultant at the Department of Paediatric Clinical Epileptology, Sleep Disorders and Functional Neurology at the Hospices Civils de Lyon, France and Director of the Epilepsy Program for the Sant Joan de Dios Children’s Hospital in Barcelona, Spain.
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. He 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 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. Pr. Arzimanoglou was awarded ILAE/IBE Ambassador for Epilepsy in 2007, received in 2017 by the EPNS the Aicardi Award for excellence in Paediatric Neurology and in 2022 the ILAE European Epilepsy Education Award.
He is visiting Professor at the Universitat de Barcelona and honorary member of the Academia Iberoamericana de Neurologia Pédiatrica (AINP).
Vilnius, March 10th, 2017 – Launching the ERN EpiCARE
ERN EpiCARE Executive Committee
Arzimanoglou Alexis (France, Spain)
Beniczky Sandor (Denmark)
Blümcke Ingmar (Germany)
Braun Kees (The Netherlands)
Cross Helen (UK)
Guerrini Renzo (Italy)
Helmstaedter Christoph (Germany)
Kalviainen Reetta (Finland)
Lagae Lieven (Belgium)
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)
Surges Rainer (Germany)
Trinka Eugen (Austria)
Vigevano Federico (Italy)
Patient representatives:
Brambilla Isabella (Italy)
Irena Bibic (Croatia)
Project management team
Martin Geroldinger
Guidelines project manager
Clotilde Guérineau
Helpdesk
ANT Congrès
Nicola Openshaw-Lawrence
E-learning and CPMS project manager
Anne Robert
Administration and communication manager
Sébile Tchaicha
Research projects manager
Johanna Van Hulle
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. Savvas Papacostas |
| Epilepsiklinikken, Rigshospitalet-Blegdamsvej and Danish Epilepsy Center Filadelfia | 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 |
Collaborating partners
| Centre | Country | City | Lead |
|---|---|---|---|
| Department of Epileptology and Epilepsy Surgery CHU Grenoble | France | Grenoble | Pr. Philippe Kahane |
| Clinical Investigation Centre (CIC), University Hospitals of Lyon (HCL) | France | Lyon | Pr. Behrouz Kassaï-Koupaï |
| Network for Therapy in Rare Epilepsies (NETRE) | Germany | Vogtareuth | Pr. Gerhard Kluger |
| 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 |
| Epilepsy Alliance Europe | Ireland | Dublin | Eugen Trinka, Norman Delanty,, Francesca Sofia, Helen Cross |
| International Bureau for Epilepsy | Ireland | Dublin | Francesca Sophia |
| Centre Hospitalier Universitaire Vaudois | Switzerland | Lausanne | Pr. Philippe Ryvlin |
| Queen Elizabeth University Hospital | United Kingdom | Glasgow | Pr. Sameer Zuberi |
| Matthew's Friends Clinics for Ketogenic Dietary Therapies | United Kingdom | Lingfield | Emma Williams, MBE |
| 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 |
