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

Nicola Openshaw-Lawrence

E-learning and CPMS project manager

Anne Robert

Administration and communication manager

Sébile Tchaicha

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

CentreCountryCityLead
Christian Doppler University Hospital, Paracelsus Medical UniversityAustriaSalzburgPr. Eugen Trinka
Center for Pediatric Epilepsy / Dpt. of Pediatrics, Medical University of ViennaAustriaViennaPr. Martha Feucht
Brussels Rare and Complex Epilepsies Consortium BRACE (Cliniques Universitaires Saint-Luc and Centre William Lennox, UCLouvain; Hôpital Universitaire Erasme and Hôpital Universitaire des Enfants Reine Fabiola, ULB; Institut de Pathologie et Génétique, Gosselies)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
Hospital District of Helsinki and Uusimaa, HUS Helsinki University Hospital (Helsinki -Oulu ERNEpi Consortium)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. Alexis Arzimanoglou
Epilepsy Dpt. University Hospitals of Marseille, AP-HMFranceMarseillePr. Fabrice Bartolomei
Hôpital Necker – Enfants MaladesFranceParisPr. Rima Nabbout
EPIRARES Consortium (Paris-Robert Debré; Rothschild; Salpêtrière)FranceParisPr. Stéphane Auvin
EGEE Consortium Strasbourg-NancyFranceStrasbourgPr. 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
National institute of mental health, neurology and neurosurgery -
Országos Klinikai Idegtudományi Intézet
HungaryBudapestDr. Anna Kelemen
IRCCS Institute of Neurological Sciences of Bologna (INSB)-AUSL di BolognaItalyBolognaDr. Francesca Bisulli
Azienda Ospedaliero-Universitaria A. Meyer, UO Neurologia PediatricaItalyFlorencePr. Renzo Guerrini
IRCCS Istituto Giannina GasliniItalyGenovaPr. Lino Nobili
Consortium: Fondazione IRCCS Istituto Neurologico Carlo Besta, ASST Niguarda Hospital, ASST Santi Paolo e Carlo Hospital ItalyMilanDr. Tiziana Granata
Fondazione Istituto Neurologico Nazionale Casimiro MondinoItalyPaviaPr. Emilio Perucca and Dr. Valentina de Giorgis
Ospedale Pediatrico Bambino GesùItalyRomePr. Federico Vigevano
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 Deu Children’s Hospital and Hospital Clinic (Adults)SpainBarcelonaPr. Carmen Fons and Pr. Mar Carreno
Hospital Del Mar-Parc de Salut MarSpainBarcelonaPr. Rodrigo Rocamora Zuñiga
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
Epilepsiklinikken, Rigshospitalet-Blegdamsvej and Danish Epilepsy Center Filadelfia DenmarkCopenhagenPr. Anna Sabers and Pr. Guido Rubboli
Aarhus Universitets hospital DenmarkAarhusAssoc. 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

Collaborating partners

CentreCountryCityLead
Department of Epileptology and Epilepsy Surgery CHU GrenobleFranceGrenoblePr. Philippe Kahane
Clinical Investigation Centre (CIC), University Hospitals of Lyon (HCL)FranceLyonPr. Behrouz Kassaï-Koupaï
Network for Therapy in Rare Epilepsies (NETRE)GermanyVogtareuthPr. Gerhard Kluger
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
Epilepsy Alliance EuropeIrelandDublinEugen Trinka, Norman Delanty,, Francesca Sofia, Helen Cross
International Bureau for EpilepsyIrelandDublinFrancesca Sophia
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