Management Team

Network Coordination

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    Ansgar W. Lohse

    University Medical Centre Hamburg-Eppendorf, Germany

Paediatric lead

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    Ekkehard Sturm

    Eberhard Karls University Tübingen

Deputy coordinator

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    Marcial Sebode

    University Medical Centre Hamburg-Eppendorf, Germany

Network Project Management

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    Aileen Franke

    University Medical Centre Hamburg-Eppendorf, Germany

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    Elaine Hussey

    University Medical Centre Hamburg-Eppendorf, Germany

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    Laura Ruhkopf

    University Medical Centre Hamburg-Eppendorf, Germany

Working Packages - Leadership teams

ICT and Logistics

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    Andrea De Gottardi

    Ospedale Italiano di Lugano, Switzerland

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    Mike Jackson

    iXscient, UK

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    Christoph Schramm

    University Medical Centre Hamburg-Eppendorf, Germany

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    Marcial Sebode

    University Medical Centre Hamburg-Eppendorf, Germany

Training

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    Juan Carlos García-Pagán

    Hospital Clínic i Provincial de Barcelona, Spain

Standardisation and Uniformity of Care

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    Matt Bolz-Johnson

    EURORDIS Rare Diseases Europe

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    Piotr Milkiewicz

    Medical University of Warsaw Hospital, Poland

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    Aurélie Plessier

    Hôpital Beaujon, Assistance Publique – Hôpitaux de Paris, France

Research

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    Mike Jackson

    iXscient, UK

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    Christoph Schramm

    University Medical Centre Hamburg-Eppendorf, Germany

Dissemination

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    Aileen Franke

    University Medical Centre Hamburg-Eppendorf, Germany

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    José Willemse

    Nederlandse Leverpatienten Vereniging, Netherlands

Disease Working Groups

Autoimmune Liver Disease (AILD) Lead

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    Tom Hemming Karlsen

    Oslo University Hospital, Norway

PBC

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    Pietro Invernizzi

    ASST Monza, Ospedale San Gerardo, Italy

AIH

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    Marcial Sebode

    University Medical Centre Hamburg-Eppendorf, Germany

PSC

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    Tom Hemming Karlsen

    Oslo University Hospital, Norway

Metabolic, Biliary Atresia & Related Disease Lead

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    Ekkehard Sturm

    Eberhard Karls University Tübingen

Genetic Cholestatic Disease

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    Henkjan J. Verkade

    University Medical Center Groningen, Netherlands

Biliary Atresia

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    Björn Fischler

    Karolinska University Hospital Stockholm, Sweden

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    Claus Petersen

    Hannover Medical School, Germany

AATD

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    Pavel Strnad

    University Hospital Aachen, Germany

Acute Liver Failure

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    Dominic Lenz

    Heidelberg University Hospital, Germany

Structural Liver Disease Lead

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    Joost P.H. Drenth

    Radboud University Medical Center Nijmegen, Netherlands

PLD

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    Joost P.H. Drenth

    Radboud University Medical Center Nijmegen, Netherlands

Vascular Liver Disease

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    Aurélie Plessier

    Hôpital Beaujon, Assistance Publique – Hôpitaux de Paris, France

Biliary Malformations

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    Joost P.H. Drenth

    Radboud University Medical Center Nijmegen, Netherlands

Wilson's Disease

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    Alain Lachaux

    Hôpital Femme Mère Enfant du CHU de Lyon, France

Rare Liver Tumours Lead

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    Henning Wege

    University Medical Centre Hamburg-Eppendorf, Germany

Liver Disease in Pregnancy Leads

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    Michael A Heneghan

    King’s College London, UK

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    Catherine Williamson

    King’s College London, UK

ERN RARE-LIVER Organisational Structure