Management Team

Network Coordination

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    Ansgar W. Lohse

    University Medical Centre Hamburg-Eppendorf, Germany

Paediatric lead

  • Marianne Jorgensen

    Marianne Hørby Jørgensen

    Rigshospitalet University of Copenhagen, Denmark

Deputy coordinator

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    Marcial Sebode

    University Medical Centre Hamburg-Eppendorf, Germany

Representatives of the hepatology societies (EASL & ESPGHAN)

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    Emmanuel Gonzales

    Hôpital Bicêtre, Assistance Publique – Hôpitaux de Paris, France

    ESPGHAN Representative

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    Virgínia Hernández Gea

    Hospital Clínic i Provincial de Barcelona, Spain

    EASL Representative

  • Marianne Jorgensen

    Marianne Hørby Jørgensen

    Rigshospitalet (RH), Copenhagen university hospital

    ESPGHAN Representative

Patient Leads

  • Portrait Leburgue

    Angela Leburgue

    ALBI France

  • José Willems

    José Willemse

    Adult Patient Lead

    Nederlandse Leverpatienten Vereniging, Netherlands

Scientific advisor

  • Emma Andersson

    Emma Andersson

    Karolinska University Hospital Stockholm, Sweden

    Scientific advisor

Network Project Management

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    Sabina Bernhardt

    Communication Officer

    University Medical Centre Hamburg-Eppendorf, Germany

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    Aileen Franke

    Project Manager

    University Medical Centre Hamburg-Eppendorf, Germany

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    Juliane Gaenge

    Project Manager

    University Medical Centre Hamburg-Eppendorf, Germany

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    Elaine Hussey

    Project Manager

    University Medical Centre Hamburg-Eppendorf, Germany

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    Hendrik Matthies

    Project Manager

    University Medical Centre Hamburg-Eppendorf, Germany

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    Laura Ruhkopf

    Secretary

    University Medical Centre Hamburg-Eppendorf, Germany

Transversal Working Groups - Leads

Registry

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    Christoph Schramm

    University Medical Centre Hamburg-Eppendorf, Germany

Clinical Patient Management System (CPMS)

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    Marcial Sebode

    University Medical Centre Hamburg-Eppendorf, Germany

Quality of Life

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    Tom Gevers

    Radboud University Medical Center Nijmegen

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    Marianne Samyn

    King’s College Hospital London, UK

  • José Willems

    José Willemse

    Adult Patient Lead

    Nederlandse Leverpatienten Vereniging, Netherlands

Clinical Practice Guidelines

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    Juan Carlos García-Pagán

    Hospital Clínic i Provincial de Barcelona, Spain

  • Aurélie Plessier

    Aurélie Plessier

    Hôpital Beaujon, Assistance Publique – Hôpitaux de Paris, France

Transition

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    Ruth De Bruyne

    Ghent University Hospital, Belgium

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    Deirdre Kelly

    Birmingham Children's Hospital NHS Foundation Trust, UK

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    João Madaleno

    Centro Hospitalar Universitario de Coimbra, Portugal

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    Zoe Mariño

    Hospital Clínic i Provincial de Barcelona, Spain

  • José Willems

    José Willemse

    Adult Patient Lead

    Nederlandse Leverpatienten Vereniging, Netherlands

Liver Disease in Pregnancy

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    Michael A Heneghan

    King’s College London, UK

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    Wiebke Papenthin

    Morbus Wilson e.V., Germany

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    Christina Weiler-Normann

    University Medical Centre Hamburg-Eppendorf, Germany

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    Catherine Williamson

    King’s College London, UK

Nurses Working Group Leads

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    Jen Clancy

    Royal Free London NHS Foundation Trust, Hepatology CNS, UK

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    Martina Fellinghauer

    Liver Care Nursing Austria, AKH Wien, Austria

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    Neus Llarch Alfonso

    BCLC – Hepatic Oncology Unit – Hospital Clínic, Barcelona, Spain

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    Denise Schäfer

    Liver Care Nursing Austria, Ordensklinikum Linz GmbH, Barmherzige Schwestern, Austria

Disease Working Groups - Leads

Primary Biliary Cholangitis (PBC)

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    Frederik Nevens

    University Hospitals KULeuven

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    Biljana Mirceska

    Save Liver Association of Patients - SLAP NGO, Macedonia

Autoimmune Hepatitis (AIH)

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    Marcial Sebode

    University Medical Centre Hamburg-Eppendorf, Germany

  • Marianne Jorgensen

    Marianne Hørby Jørgensen

    Rigshospitalet University of Copenhagen, Denmark

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    Bert Tomsin

    Vlaamse PBC-PSC-AIH patiëntenvereniging, Belgium

  • José Willems

    José Willemse

    Adult Patient Lead

    Nederlandse Leverpatienten Vereniging, Netherlands

Primary sclerosing cholangitis (PSC)

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    Annika Bergquist

    Karolinska University Hospital Stockholm, Sweden

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    Norman Junge

    Hannover Medical School, Germany

  • Portrait Walmsley

    Martine Walmsley

    PSC support, UK; EASL Policy and Public Health Committee

Genetic Cholestatic Disease

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    Henkjan J. Verkade

    University Medical Center Groningen, Netherlands

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    Emmanuel Gonzales

    Hôpital Bicêtre, Assistance Publique – Hôpitaux de Paris, France

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    Verena Keitel

    Otto-von-Guericke University Magdeburg, Germany

Biliary Atresia

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    Björn Fischler

    Karolinska University Hospital Stockholm, Sweden

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    Claus Petersen

    Hannover Medical School, Germany

Alpha-1 Antitrypsin Liver Disease (AATD)

  • Strnad

    Pavel Strnad

    University Hospital Aachen, Germany

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    Mathias Ruiz

    CHU Lyon, France

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    Frank Willersinn

    Alpha-1 Plus asbl, Belgium

Acute Liver Failure

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    Dominic Lenz

    Heidelberg University Hospital, Germany

  • José Willems

    José Willemse

    Adult Patient Lead

    Nederlandse Leverpatienten Vereniging, Netherlands

Polycystic liver disease

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    Joost P.H. Drenth

    Radboud University Medical Center Nijmegen, Netherlands

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    Tess Harris

    PKD Charity, UK

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    Uwe Korst

    PKDCure, Germany

Vascular Liver Disease - VALDIG

  • Aurélie Plessier

    Aurélie Plessier

    Hôpital Beaujon, Assistance Publique – Hôpitaux de Paris, France

Biliary Malformations

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    Janneke Bruggink

    University Medical Center Groningen, Netherlands

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    Joost P.H. Drenth

    Radboud University Medical Center Nijmegen, Netherlands

Wilson Disease

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    Wiebke Papenthin

    Morbus Wilson e.V., Germany

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    Thomas Sandahl

    Aarhus Universitetshospital, Denmark

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    Piotr Socha

    Children's Memorial Health Institute, Warsaw

Rare Liver Tumours

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    Johann von Felden

    University Medical Centre Hamburg-Eppendorf, Germany

  • Maria Reig

    Maria Reig

    Hospital Clínic i Provincial de Barcelona, Spain

ERN RARE-LIVER Organisational Structure

The ERN RARE-LIVER Management Board

The ERN RARE-LIVER Management Board holds regular meetings to consult on the various activities. It is composed of members representing the following areas:

  • Coordination
  • Patient representation (ePAG)
  • Clinical Patient Management System (CPMS)
  • Registry
  • Quality of Life
  • Clinical practice guidelines
  • The three rare liver disease pillars
  • Hepatology societies (adult and paediatric)
  • Basic research
  • Project Management


ERN RARE-LIVER Statutes

The statutes are available to download below.