Governance

Network Coordination

Ansgar Lohse 2022

Ansgar W. Lohse

  • Network Coordination

University Medical Centre Hamburg-Eppendorf, Germany

Paediatric lead

Marianne Jorgensen

Marianne Hørby Jørgensen

  • Paediatric lead
  • Pillar Leads
  • Autoimmune Hepatitis (AIH)

Rigshospitalet University of Copenhagen, Denmark

Deputy Coordinator and Lead Clinical Patient Management System (CPMS)

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Marcial Sebode

  • Deputy Coordinator and Lead Clinical Patient Management System (CPMS)
  • Deputy coordinator
  • Autoimmune Hepatitis (AIH)

University Medical Centre Hamburg-Eppendorf, Germany

R-Liver Registry Lead

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Christoph Schramm

  • R-Liver Registry Lead
  • Research

University Medical Centre Hamburg-Eppendorf, Germany

Representatives of the hepatology societies (EASL & ESPGHAN)

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Virgínia Hernández Gea

Hospital Clínic i Provincial de Barcelona, Spain

  • Representatives of the hepatology societies (EASL & ESPGHAN)

EASL Representative

Marianne Jorgensen

Marianne Hørby Jørgensen

Rigshospitalet (RH), Copenhagen university hospital

  • Representatives of the hepatology societies (EASL & ESPGHAN)

ESPGHAN Representative

Emer Fitzpatrick

King’s College Hospital London

  • Representatives of the hepatology societies (EASL & ESPGHAN)

ESPGHAN Representative

Patient Leads

José Willems

José Willemse

Adult Patient Lead

  • Patient Leads
  • Quality of Life
  • Transition
  • Autoimmune Hepatitis (AIH)
  • Acute Liver Failure

Nederlandse Leverpatienten Vereniging, Netherlands

Portrait Leburgue

Angela Leburgue

  • Patient Leads
  • Primary Biliary Cholangitis (PBC)

ALBI France

Training and Education Committee

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Juan Carlos García-Pagán

  • Training and Education Committee
  • Clinical Practice Guidelines

Hospital Clínic i Provincial de Barcelona, Spain

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Claus Petersen

  • Training and Education Committee

Hannover Medical School, Germany

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Anja Geerts

University Hospital Ghent, Belgium

  • Training and Education Committee
Isabel Gonçalves

Isabel Gonçalves

  • Training and Education Committee

Centro Hospitalar Universitario de Coimbra, Portugal

Scientific advisor

Emma Andersson

Emma Andersson

Karolinska University Hospital Stockholm, Sweden

  • Scientific advisor

Scientific advisor

Network Project Management

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Sabina Bernhardt

Communication Officer

  • Network Project Management

University Medical Centre Hamburg-Eppendorf, Germany

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Hendrik Matthies

Project Manager

  • Network Project Management

University Medical Centre Hamburg-Eppendorf, Germany

Nagham Issa

Nagham Issa

Project Manager

  • Network Project Management

University Medical Centre Hamburg-Eppendorf, Germany

Carmen Ramien

Caren Ramien

Scientific Officer

  • Network Project Management

University Medical Centre Hamburg-Eppendorf, Germany

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Kari Klein

Project Manager

  • Network Project Management

University Medical Centre Hamburg-Eppendorf, Germany

Quality of Life

José Willems

José Willemse

Adult Patient Lead

  • Patient Leads
  • Quality of Life
  • Transition
  • Autoimmune Hepatitis (AIH)
  • Acute Liver Failure

Nederlandse Leverpatienten Vereniging, Netherlands

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Marianne Samyn

  • Quality of Life

King’s College Hospital London, UK

Maciej Janik

Maciej Janik

Medical University of Warsaw Hospital, Poland

  • Quality of Life

Transition

José Willems

José Willemse

Adult Patient Lead

  • Patient Leads
  • Quality of Life
  • Transition
  • Autoimmune Hepatitis (AIH)
  • Acute Liver Failure

Nederlandse Leverpatienten Vereniging, Netherlands

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Deirdre Kelly

  • Transition

Birmingham Children’s Hospital NHS Foundation Trust, UK

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Ruth De Bruyne

  • Transition

Ghent University Hospital, Belgium

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João Madaleno

  • Transition

Centro Hospitalar Universitario de Coimbra, Portugal

Zoe Marino

Zoe Mariño

  • Transition

Hospital Clínic i Provincial de Barcelona, Spain

Karsten Vanden Wyngaert

Karsten Vanden Wyngaert

  • Transversal Working Groups - Leads
  • Transition

Ghent University Hospital, Belgium

Liver Disease in Pregnancy

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Wiebke Papenthin

  • Wilson Disease
  • Liver Disease in Pregnancy

Morbus Wilson e.V., Germany

Willy Visser

Willy Visser

Erasmus MC: University Medical Center Rotterdam, Netherlands

  • Liver Disease in Pregnancy

Nurses Working Group Leads

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Martina Fellinghauer

Liver Care Nursing Austria, AKH Wien, Austria

  • Nurses Working Group Leads
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Jen Clancy

Royal Free London NHS Foundation Trust, Hepatology CNS, UK

  • Nurses Working Group Leads
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Denise Schäfer

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

  • Nurses Working Group Leads
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Neus Llarch Alfonso

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

  • Nurses Working Group Leads

Primary Biliary Cholangitis (PBC)

Portrait Leburgue

Angela Leburgue

  • Patient Leads
  • Primary Biliary Cholangitis (PBC)

ALBI France

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Frederik Nevens

  • Primary Biliary Cholangitis (PBC)

University Hospitals KULeuven, Belgium

Alessio Gerussi neu

Alessio Gerussi

ASST-Monza, Ospedale San Gerardo, Italy

  • Primary Biliary Cholangitis (PBC)
Adriaan van der Meer

Adriaan van der Meer

Erasmus UMC Rotterdam, Netherlands

  • Primary Biliary Cholangitis (PBC)

Autoimmune Hepatitis (AIH)

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Marcial Sebode

  • Deputy Coordinator and Lead Clinical Patient Management System (CPMS)
  • Deputy coordinator
  • Autoimmune Hepatitis (AIH)

University Medical Centre Hamburg-Eppendorf, Germany

José Willems

José Willemse

Adult Patient Lead

  • Patient Leads
  • Quality of Life
  • Transition
  • Autoimmune Hepatitis (AIH)
  • Acute Liver Failure

Nederlandse Leverpatienten Vereniging, Netherlands

Marianne Jorgensen

Marianne Hørby Jørgensen

  • Paediatric lead
  • Pillar Leads
  • Autoimmune Hepatitis (AIH)

Rigshospitalet University of Copenhagen, Denmark

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Bert Tomsin

Patiëntenvereniging Zeldzame Leverziekten, Belgium

  • Autoimmune Hepatitis (AIH)
Vincenzo Ronca

Vincenzo Ronca

  • Autoimmune Hepatitis (AIH)

University Hospitals Birmingham, UK

Primary sclerosing cholangitis (PSC)

Portrait Walmsley

Martine Walmsley

  • Primary sclerosing cholangitis (PSC)

PSC support, UK; EASL Policy and Public Health Committee

Norman Junge

Norman Junge

  • Primary sclerosing cholangitis (PSC)

Hannover Medical School, Germany

Nora Cazzagon

Nora Cazzagon

Azienda Ospedaliera Università di Padova, Italy

  • Primary sclerosing cholangitis (PSC)

Genetic Cholestatic Disease

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Emmanuel Gonzales

  • Genetic Cholestatic Disease

Hôpital Bicêtre, Assistance Publique – Hôpitaux de Paris, France

Henkjan Verkade

Henkjan J. Verkade

  • Genetic Cholestatic Disease

University Medical Center Groningen, Netherlands

Porträt Verena Keitel

Verena Keitel

  • Genetic Cholestatic Disease

Otto-von-Guericke University Magdeburg, Germany

Biliary Atresia

Bjoern Fischler

Björn Fischler

  • Biliary Atresia

Karolinska University Hospital Stockholm, Sweden

Dr. Dr. Ekkehard Sturm

Ekkehard Sturm

Universitätsklinikum Tübingen, Germany

  • Biliary Atresia

Alpha-1 Antitrypsin Liver Disease (AATD)

Strnad

Pavel Strnad

  • Alpha-1 Antitrypsin Liver Disease (AATD)

University Hospital Aachen, Germany

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Mathias Ruiz

  • Alpha-1 Antitrypsin Liver Disease (AATD)

CHU Lyon, France

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Frank Willersinn

  • Alpha-1 Antitrypsin Liver Disease (AATD)

Alpha-1 Plus asbl, Belgium

Acute Liver Failure

José Willems

José Willemse

Adult Patient Lead

  • Patient Leads
  • Quality of Life
  • Transition
  • Autoimmune Hepatitis (AIH)
  • Acute Liver Failure

Nederlandse Leverpatienten Vereniging, Netherlands

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Dominic Lenz

  • Acute Liver Failure

Heidelberg University Hospital, Germany

Polycystic liver disease

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Joost P.H. Drenth

  • Pillar Leads
  • Polycystic liver disease
  • Biliary Malformations

Amsterdam University Medical Center, Netherlands

Vascular Liver Disease - VALDIG

Aurélie Plessier

Aurélie Plessier

  • Clinical Practice Guidelines
  • Vascular Liver Disease - VALDIG

Hôpital Beaujon, Assistance Publique – Hôpitaux de Paris, France

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Valerie McLin

  • Vascular Liver Disease - VALDIG

University Hospitals Geneva, Swiss Centre for Liver Disease in Children, Switzerland

Biliary Malformations

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Joost P.H. Drenth

  • Pillar Leads
  • Polycystic liver disease
  • Biliary Malformations

Amsterdam University Medical Center, Netherlands

Janneke Brugink

Janneke Bruggink

  • Biliary Malformations

University Medical Center Groningen, Netherlands

Wilson Disease

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Thomas Sandahl

  • Wilson Disease

Aarhus Universitetshospital, Denmark

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Piotr Socha

  • Wilson Disease

Children’s Memorial Health Institute, Warsaw

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Wiebke Papenthin

  • Wilson Disease
  • Liver Disease in Pregnancy

Morbus Wilson e.V., Germany

Rare Liver Tumours

Maria Reig

Maria Reig

  • Rare Liver Tumours

Hospital Clínic i Provincial de Barcelona, Spain

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Johann von Felden

  • Rare Liver Tumours

University Medical Centre Hamburg-Eppendorf, Germany

Organigramm

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 here