Governance

Management Team

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)

sebode_marcial_20190403_2.jpg

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

schramm_christoph_fuer_homepage_aktuell_27022019.jpg

Christoph Schramm

  • R-LIVER Registry Lead
  • Research

University Medical Centre Hamburg-Eppendorf, Germany

Representatives of the hepatology societies (EASL & ESPGHAN)

virginia_1.jpg

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

Emer Fitzpatrick

King’s College Hospital London

  • Representatives of the hepatology societies (EASL & ESPGHAN)

ESPGHAN Representative

Patient Leads

wiebke_papenthin.jpg

Wiebke Papenthin

  • Patient Leads

Morbus Wilson e.V., Germany

Portrait Leburgue

Angela Leburgue

  • Patient Leads
  • Primary Biliary Cholangitis (PBC)

ALBI (L’Association pour la Lutte contre les maladies inflammatoires du foie et des voies Biliaires), France

Training and Education Committee

p2.jpg

Juan Carlos García-Pagán

  • Training and Education Committee
  • Clinical Practice Guidelines

Hospital Clínic i Provincial de Barcelona, Spain

portrait_petersen_2016.jpg

Claus Petersen

  • Training and Education Committee

Hannover Medical School, Germany

foto_anja_geerts-ghent.jpg

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 Institutet, Sweden

  • Scientific advisor

Network Project Management

Matthies_Hendrik_portrait

Hendrik Matthies

Project Manager (Grant Management, Finance Controlling, Evaluation)

  • Network Project Management

University Medical Centre Hamburg-Eppendorf, Germany

Nagham Issa

Nagham Issa

Project Manager (CPMS, R-LIVER, Stakeholder Relations & Partnerships)

  • Network Project Management

University Medical Centre Hamburg-Eppendorf, Germany

Carmen Ramien

Caren Ramien

Scientific Officer (Clinical Practice Guidelines, Research & Surveys)

  • Network Project Management

University Medical Centre Hamburg-Eppendorf, Germany

klein-kari_20240716-01_1_mittel.jpg

Kari Klein

Project Manager (Training & Education, Disease Working Groups, Social Media)

  • Network Project Management

University Medical Centre Hamburg-Eppendorf, Germany

Transversal Working Groups - Leads

Quality of Life (QoL)

marianne_samyn_1.jpeg

Marianne Samyn

  • Quality of Life (QoL)

King’s College Hospital London, UK

Portrait Leburgue

Angela Leburgue

  • Quality of Life (QoL)

ALBI (L’Association pour la Lutte contre les maladies inflammatoires du foie et des voies Biliaires), France

Maciej Janik

Maciej Janik

  • Quality of Life (QoL)

Medical University of Warsaw Hospital, Poland

ewa_wunsch.jpg

Ewa Wunsch

  • Quality of Life (QoL)

Pomeranian Medical University, Szczecin, Poland

Transition

picture_ruthdebruyne.jpeg

Ruth De Bruyne

  • Transition

Ghent University Hospital, Belgium

Liver Disease in Pregnancy

wiebke_papenthin.jpg

Wiebke Papenthin

  • Liver Disease in Pregnancy
  • Wilson Disease (WD)

Morbus Wilson e.V., Germany

dold.jpeg

Dr. Leona Dold

  • Liver Disease in Pregnancy

Universitätsklinikum Bonn

Willy Visser

Willy Visser

  • Liver Disease in Pregnancy

Erasmus MC: University Medical Center Rotterdam, Netherlands

Nurses Working Group Leads

foto_mfellinghauer.png

Martina Fellinghauer

Liver Care Nursing Austria, AKH Wien, Austria

  • Nurses Working Group Leads
jclancy.jpg

Jen Clancy

Royal Free London NHS Foundation Trust, Hepatology CNS, UK

  • Nurses Working Group Leads
denise_schaefer.jpg

Denise Schäfer

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

  • Nurses Working Group Leads
foto_nllarch.jpg

Neus Llarch Alfonso

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

  • Nurses Working Group Leads

Disease Working Groups - Leads

Autoimmune Hepatitis (AIH)

sebode_marcial_20190403_2.jpg

Marcial Sebode

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

University Medical Centre Hamburg-Eppendorf, Germany

Marianne Jorgensen

Marianne Hørby Jørgensen

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

Rigshospitalet University of Copenhagen, Denmark

francesca_scarpa.png

Francesca Scarpa

AMAF Italy, Patient Representative Management Board

  • Autoimmune Hepatitis (AIH)

Primary Biliary Cholangitis (PBC)

Alessio Gerussi neu

Alessio Gerussi

ASST-Monza, Ospedale San Gerardo, Italy

  • Primary Biliary Cholangitis (PBC)
Portrait Leburgue

Angela Leburgue

  • Patient Leads
  • Primary Biliary Cholangitis (PBC)

ALBI (L’Association pour la Lutte contre les maladies inflammatoires du foie et des voies Biliaires), France

Adriaan van der Meer

Adriaan van der Meer

Erasmus UMC Rotterdam, Netherlands

  • Primary Biliary Cholangitis (PBC)

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

2020_emmanuel_gonzales_2_1.jpg

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 (BA)

Bjoern Fischler

Björn Fischler

  • Biliary Atresia (BA)

Karolinska University Hospital Stockholm, Sweden

Dr. Dr. Ekkehard Sturm

Ekkehard Sturm

Universitätsklinikum Tübingen, Germany

  • Biliary Atresia (BA)

Alpha-1 Antitrypsin Liver Disease (AATD)

Strnad

Pavel Strnad

  • Alpha-1 Antitrypsin Liver Disease (AATD)

University Hospital Aachen, Germany

photo_mr_2.jpg

Mathias Ruiz

  • Alpha-1 Antitrypsin Liver Disease (AATD)

CHU Lyon, France

frank.jpg

Frank Willersinn

  • Alpha-1 Antitrypsin Liver Disease (AATD)

Alpha-1 Plus asbl, Belgium

Acute Liver Failure (ALF)

dominic_lenz.jpg

Dominic Lenz

  • Acute Liver Failure (ALF)

Heidelberg University Hospital, Germany

Polycystic Liver Disease (PLD)

eh_2102_drenth-5_1.jpg

Joost P.H. Drenth

  • Pillar Leads
  • Polycystic Liver Disease (PLD)
  • Biliary Malformations (BM)

Amsterdam University Medical Center, Netherlands

Vascular Liver Disease (VLD)

Aurélie Plessier

Aurélie Plessier

  • Clinical Practice Guidelines
  • Vascular Liver Disease (VLD)

Hôpital Beaujon, Assistance Publique – Hôpitaux de Paris, France

mclin.png

Valerie McLin

  • Vascular Liver Disease (VLD)

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

Biliary Malformations (BM)

eh_2102_drenth-5_1.jpg

Joost P.H. Drenth

  • Pillar Leads
  • Polycystic Liver Disease (PLD)
  • Biliary Malformations (BM)

Amsterdam University Medical Center, Netherlands

Janneke Brugink

Janneke Bruggink

  • Biliary Malformations (BM)

University Medical Center Groningen, Netherlands

Wilson Disease (WD)

thomas.jpg

Thomas Sandahl

  • Wilson Disease (WD)

Aarhus Universitetshospital, Denmark

piotr_socha_7261_1.jpg

Piotr Socha

  • Wilson Disease (WD)

Children’s Memorial Health Institute, Warsaw

wiebke_papenthin.jpg

Wiebke Papenthin

  • Liver Disease in Pregnancy
  • Wilson Disease (WD)

Morbus Wilson e.V., Germany

Couchonnal-Bedoya

Eduardo Couchonnal-Bedoya

  • Wilson Disease (WD)

Hospices Civils de Lyon, France

Rare Liver Tumours

Maria Reig

Maria Reig

  • Rare Liver Tumours

Hospital Clínic i Provincial de Barcelona, Spain

jvfelden.jfif

Johann von Felden

  • Rare Liver Tumours

University Medical Centre Hamburg-Eppendorf, Germany

Haemochromatosis

pietrangelo.png

Antonello Pietrangelo

  • Haemochromatosis

University Hospital of Modena, Italy

Alveolar Echinococcosis

annalisa_berzigotti.jpg

Prof. Annalisa Berzigotti, MD, PhD

  • Alveolar Echinococcosis

Inselspital Bern, Department of Visceral Surgery and Medicine

Anja Lachenmayer

  • Alveolar Echinococcosis

Inselspital Bern, Department of Visceral Surgery and Medicine

Organigramm ERN RARE-LIVER

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)
  •    R-LIVER Registry
  •    Quality of Life
  •    Clinical practice guidelines
  •    The three rare liver disease pillars
  •    Hepatology societies (adult and paediatric)
  •    Basic research
  •    Project Management

Procedure for complaints against the European Reference Networks (ERNs)

ERN RARE-LIVER Conflicts of Interest

You can view the conflicts of interest here.