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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)
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 (Austria)

Guidelines and Education Manager

Anne Robert (France)

Joint Action JARDIN Manager

Clotilde Guérineau (France)

Helpdesk
ANT Congrès

Nicola Openshaw Lawrence
Nicola Openshaw-Lawrence (UK)

CPMS & Patient Empowerment Manager

Laura Roig (Spain)

Communication Manager

Sébile Tchaicha
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

CentreCountryCityLead
Christian Doppler University Hospital, Paracelsus Medical UniversityAustria SalzburgPr. Eugen Trinka
Center for Pediatric Epilepsy / Dpt. of Pediatrics, Medical University of ViennaAustriaViennaPr. Martha Feucht
BRACE Consortium (Brussels Rare and Complex Epilepsies)

Cliniques Universitaires Saint-Luc, UCL (Pr. Roberta Cilio)
Hôpital Erasme, ULB (Pr. Nicolas Gaspard)
Hôpital Universitaire des enfants Reine Fabiola, ULB (Pr. Alec Aeby)
Institut de Pathologie et de Génétique, ASBL (Dr. Damian Lederer)
Centre Neurologique William Lennox, UCL (Dr. Pascal Vrielynck)
BelgiumBrusselPr. Roberta Cilio
University Hospital Gasthuisberg KU LeuvenBelgiumLeuvenPr. Lieven Lagae
Brno Epilepsy Center (St. Anne's University Hospital and University Hospital Brno)Czech RepublicBrnoPr. Milan Brazdil
Motol University HospitalCzech RepublicPraguePr. Petr Marusic
Helsinki-Oulu ERNEpi Consortium

Hospital District of Helsinki and Uusimaa HUS, Helsinki University Hospital
Oulou University, Northern Ostrobothnia Hospital District
FinlandHelsinkiPr. Eeva-Liisa Metsähonkala
Pohjois-Savon sairaanhoitopiiri (Kuopio University Hospital) FinlandKuopioPr. Reetta Kalviainen
CHRU LILLE, Epilepsy UnitFranceLillePr. Sylvie Nguyen
Epilepsy Departments, University Hospitals of Lyon (HCL)FranceLyonPr. Gaetan Lesca & Dr. Karine Ostrowsky-Coste
Epilepsy Dpt. University Hospitals of Marseille, AP-HMFranceMarseillePr. Fabrice Bartolomei
Hôpital Necker – Enfants MaladesFranceParisPr. Rima Nabbout
EPIRARES Consortium

University Children’s Hospital Robert Debré, APHP (Pr. Stéphane Auvin)l
University Hospital Pitié-Salpêtrière, APHP (Pr. Vincent Navarro)
Adolphe de Rothschild Foundation Hospital (Dr. Georg Dorfmüller)
FranceParisPr. Stéphane Auvin
Epilepsy Grand Est Europe Consortium EGEE

University Hospital of Strasbourg (Pr. Edouard Hirsch)
University Hospital Of Nancy (Pr. Louis Maillard)
FranceStrasbourgPr. Edouard Hirsch
University Hospital Bonn, Department of EpileptologyGermanyBonnPr. Rainer Surges
Universitätsklinikum ErlangenGermanyErlangenPr. Hajo Hamer
Epilepsy Centre, University Hospital FreiburgGermanyFreiburgPr. Andreas Schulze-Bonhage
Epilepsy Dpt. Universitätsklinikum TübingenGermanyTübingenPr. Holger Lerche
Semmelweis University Clinic for Neurosurgery and NeurointerventionHungaryBudapestDr. Anna Kelemen
IRCCS Institute of Neurological Sciences of Bologna (INSB)-AUSL di BolognaItalyBolognaPr. Francesca Bisulli
Azienda Ospedaliera Universitaria Meyer IRCCS, UO Neurologia PediatricaItalyFlorencePr. Renzo Guerrini
IRCCS Instituto Giannina GasliniItalyGenovaPr. Lino Nobili
Milano Epilepsy Consortium

Fondazione IRCCS Istituto Neurologico Carlo Besta (Dr. Tiziana Granata)
ASST Niguarda Hospital (Dr. Laura Tassi)
ASST Santi Paolo e Carlo Hospital (Dr. Maria Paola Canevini)
ItalyMilanDr. Tiziana Granata
Fondazione Istituto Neurologico Nazionale Casimiro MondinoItalyPaviaDr. Valentina De Giorgis
Ospedale Pediatrico Bambino GesùItalyRomeDr. Nicola Specchio
AOUI di Verona, Unità Operativa Complessa (UOC) di Neuropsichiatria InfantileItalyVeronaPr. Francesca Darra
University Medical Center Utrecht, Brain Centre Rudolf MagnusNetherlandsUtrechtPr. Kees P. J. Braun
National Centre for EpilepsyNorwayOsloPr. Morten Lossius
The Children's Memorial Health InstitutePolandWarsawPr. Katarzyna Kotulska-Jozwiak
Centro Hospitalar e Universitario de CoimbraPortugalCoimbraDr. Francisco Sales
Centro de Referencia de Epilepsias Refractrias, Hospital de Santa MariaPortugalLisbonPr. Carla Bentes
Centro Hospitalar do PortoPortugalPortoDr. Rui Rangel
Alexandru Obregia Clinical HospitalRomaniaBucharestPr. Dana Craiu
Ljubljana University Medical Centre, Dpts. of Child, Adolescent and Developmental Neurology & Department of NeurologySloveniaLjubljanaDr. Mirjana Perković Benedik
Hospital Sant Joan de Déu and Hospital Clínic Consortium

Hospital Clinic University Hospital (Pr. Mar Carreño)
Hospital Sant Joan de Déu Univeristy Hospital (Pr. Carmen Fons)
SpainBarcelonaPr. Alexis Arzimanoglou
Hospital Universitario y Politecnico La FeSpainValenciaDr. Vincente Villaneva Haba
Sahlgrenska University HospitalSwedenGothenburgPr. Johan Bjellvi

Affiliated members

CentreCountryCityLead
University Hospital Centre SestreMilosrdnice - KliničkibolničkicentarSestremilosrdniceCroatiaZagrebPr. Maša Malenica
Department of Neurology, School of Medicine, University Hospital Centre Zagreb CroatiaZagrebPr. Željka Petelin Gadže
The Cyprus Foundation For Muscular Dystrophy Research / Cyprus Institute of Neurology and GeneticsCyprusNicosiaPr. Savvas Papacostas
Rigshospitalet and Danish Epilepsy Center Filadelfia Consortium

Epilepsiklinikken, Rigshospitalet-Blegdamsvej (Pr. Anna Sabers)
Filadelfia Danish Epilepsy Center, Dianalund (Pr. Guido Rubboli)
DenmarkCopenhagenPr. Anna Sabers and Pr. Guido Rubboli
Aarhus Universitets hospitalDenmarkAarhusAssoc. Prof Jakob Christensen
Tartu University HospitalEstoniaTartuDr. Ulvi Vaher
Tallin Children’s HospitalEstoniaTallinDr. Inga Talvik
University Children’s Clinical Hospital - Bērnu klīniskā universitātes slimnīcaLatviaRigaDr. Jurģis Strautmanis
Hospital of the Lithuanian University of Health Sciences KaunoklinikosLithuaniaKaunasGiedre Gelziniene
Department of Neurology, Institute of Clinical Medicine, Faculty of Medicine, Vilnius University LithuaniaVilniusPr. Ruta Mameniskiene
Centre Hospitalier de LuxembourgLuxembourgLuxembourgDr. Martine Goergen
MALTA Mater Dei HospitalMaltaMsidaDr. James Clark

Supporting partners

CentreCountryCityLead
Department of Epileptology and Epilepsy Surgery CHU GrenobleFranceGrenoblePr. Philippe Kahane
Greek Rare Epilepsies Consortium (GREC), Attikon, Athens and St. Luke’s, Thessaloniki HospitalsGreeceAthensPr. A. Dinopoulos and Dr. K. Garganis
Infant Research CentreIrelandCorkPr. Geraldine Boylan
Beaumont HospitalIrelandDublinDr Norman Delanty
Centre Hospitalier Universitaire VaudoisSwitzerlandLausannePr. Philippe Ryvlin
Queen Elizabeth University HospitalUnited KingdomGlasgowPr. Sameer Zuberi
Matthew's Friends Clinics for Ketogenic Dietary TherapiesUnited KingdomLingfieldEmma Williams, MBE
Great Ormond Street Hospital for Children NHS TrustUnited KingdomLondonPr. J. Helen Cross
University College London Hospitals NHS Foundation TrustUnited KingdomLondonPr. Matthew Walker
Oxford University Hospitals NHS Foundation TrustUnited KingdomOxfordDr. Arjune Sen
Epilepsy Department, St. Ivan Rilski University HospitalBulgariaSofiaDr. Petia Dimova

Scientific Societies and Organizations Partnerships