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Introduction
Patient Representation
European Patient Advocacy Group (ePAG) Missions Hereditary Haemorrhagic Telangiectasia (HHT) Heritable Thoracic Aortic Diseases (HTAD) Medium Sized Arteries (MSA) Neurovascular Diseases (NEUROVASC) Pediatric and Primary Lymphedema (PPL) Vascular Anomalies (VASCA) Patient Organisations
Experts & Centers
Experts Centers
Working Groups
Rare Disease Working Groups Transversal Working Groups
Coordination Project Team Partnerships

Experts

Guillaume JONDEAU 2
VASCERN Coordinator
Pr. Guillaume JONDEAU
Cardiologist
Pubmed

HEALTHCARE PROVIDER (HCP) FULL MEMBERS

Belgium
AZ Sint-Maarten

PPL European Reference Center, Lymph Center

Robert J. DAMSTRA 13
Dr. Guido GIACALONE
Vascular Surgeon
Pubmed
Florence BELVA
Dr. Florence BELVA
Vascular Surgeon
Pubmed
Cliniques universitaires Saint-Luc

VASCA European Reference Center, Center for Congenital Vascular Defects

Miikka VIKKULA
Pr. Miikka VIKKULA
Clinical Geneticist
Pubmed
Laurence M. BOON
Pr. Laurence M. BOON
Plastic and Reconstructive Surgeon
Pubmed
Ghent University Hospital

HTAD European Reference Center, Center for Medical Genetics 

Julie De BACKER 2
Pr. Julie De BACKER
Cardiologist and clinical geneticist
Pubmed
Liesbeth WILDERO VAN WOUWE 1
Liesbeth WILDERO VAN WOUWE
Genetic Couselor
Pubmed
Ghent University Hospital

MSA European Reference Center, Center for Medical Genetics 

Julie De BACKER 2
Pr. Julie De BACKER
Cardiologist and clinical geneticist
Pubmed
Fransiska MALFAIT 1
Dr. Fransiska MALFAIT
Clinical geneticist
Pubmed
University Hospital of Antwerp

HTAD & MSA European Reference Center, Center of Medical Genetics 

Bart LOEYS 2
Pr. Bart LOEYS
Clinical cardiogeneticist
Pubmed
Aline VERSTRAETEN 2
Dr. Aline VERSTRAETEN
Clinical geneticist
Pubmed
University Hospitals Leuven

PPL European Reference Center, Leuven Lymphovenous Center

Sarah THOMIS
Pr. Sarah THOMIS
Vascular Surgeon
Pubmed
Nele DEVOOGDT
Dr. Nele DEVOOGDT
Physiotherapist
Pubmed
Denmark
Aarhus University Hospital

HTAD & MSA European Reference Center, Department of Clinical Medicine

Dorte Gulbrand NIELSEN 9
Dr. Dorte Gulbrand NIELSEN
Cardiologist
Pubmed
Pernille GREGERSEN 1
Dr. Pernille GREGERSEN
Clinical Associate Professor
Pubmed
Odense University Hospital (OUH)

HHT European Reference Center, OUH HHT Center

Anette Kjeldsen
Pr. Anette KJELDSEN
Otorhinolaryngologist
Pubmed
Pernille M TØRRING
Dr. Pernille M TØRRING
Clinical Geneticist
Pubmed
Rigshospitalet

PPL European Reference Centre, Department of Clinical Medicine

Robert J. DAMSTRA 9
Dr. Tonny KARLSMARK
Clinical Associate Professor
Pubmed
Hanne BUCIEK HOVE
Dr. Hanne BUCIEK HOVE
Consultant Clinical Geneticist
Pubmed
Rigshospitalet

VASCA European Reference Centre, Department of Otolaryngology and Audiology

Leo SCHULTZE KOOL
Dr. Mikkel KALTOFT
Otorhinolaryngologist
Pubmed
Finland
Helsinki University Hospital

PPL European Reference Centre, Department of Plastic Surgery

Sinikka SUOMINEN
Pr. Sinikka SUOMINEN
Plastic Surgeon
Pubmed
Helsinki University Hospital

VASCA European Reference Center, Department of Pediatric Surgery

Kristiina KYRKLUND
Pr. Kristiina KYRKLUND
Pediatric Surgeon
Pubmed
Jukka Tolonen 3
Dr. Jukka TOLONEN
Internal Medicine Specialist
Pubmed
France
AP-HP Hôpital Européen Georges Pompidou

MSA European Reference Center, Rare Vascular Diseases Reference Centre (CRMR)

Michael FRANK
Dr. Michael FRANK
Consultant Cardiologist
Pubmed
Tristan MIRAULT 2
Pr. Tristan MIRAULT
Professor of Vascular Medicine
Pubmed
AP-HP Hôpital Européen Georges Pompidou

PPL European Reference Center, Primary Lymphedema Unit, Hôpital Cognacq-Jay

Stéphane VIGNES 2
Dr. Stéphane VIGNES
Specialist in Internal Medecine Lymphology
Pubmed
Caroline FOURGEAUD 1
Dr. Caroline FOURGEAUD
Vascular Physician
Pubmed
AP-HP Hôpital Bichat – Claude-Bernard

HTAD European Reference Center, CRMR Marfan Syndrome and related disorders

Guillaume JONDEAU 2
Pr. Guillaume JONDEAU
Cardiologist
Pubmed
Olivier MILLERON 1
Dr. Olivier MILLERON
Cardiologist
Pubmed
AP-HP Hôpital Lariboisiere

 NEUROVASC European Reference Center, Centre de Référence pour les maladies rares des Vaisseaux du Cerveau et de l’œil (CERVCO) 

Dominique HERVE
Dr. Dominique HERVE
Neurologist
Pubmed
Hugues CHABRIAT
Pr. Hugues CHABRIAT
Neurologist
Pubmed
AP-HP Hôpital Lariboisiere

VASCA European Reference Centre, Department of Neuroradiology and ENT

Annouk Anne BISDORFF
Dr. Annouk Anne BISDORFF
Neuroradiologist
Pubmed
Olivia BOCCARA
Dr. Olivia BOCCARA
Dermatologist and Venerologist
Pubmed
Hôpital Femme Mère Enfant – HCL

HHT European Reference Center, CRMR Rendu-Osler

Sophie DUPUIS-GIROD 117
Dr. Sophie DUPUIS-GIROD
Pediatrician and Geneticist
Pubmed
Ruben HERMANN 1
Dr. Ruben HERMANN
ENT Physician
Pubmed
Germany
Alfried Krupp Krankenhaus

NEUROVASC European Reference Center, Neurology Clinic

Essen University Hospital

HHT European Reference Center, Essen Center for Rare Diseases 

UKGM – Universitätsklinikum Marburg

HHT European Reference Center, Universitätsklinikum Marburg Angioma Center

Sophie DUPUIS-GIROD 43
Pr. Urban GEISTHOFF
Otorhinolaryngologist
Pubmed
Andreas MAHNKEN
Pr. Andreas MAHNKEN
Radiologist
Pubmed
University Medical Center Freiburg

VASCA European Reference Center, Center of Pediatrics and Adolescent Medicine

Leo SCHULTZE KOOL 19
Dr. Friedrich KAPP
Pediatric Hematologist/Oncologist
Pubmed
Annegret HOLM
Dr. Annegret HOLM
Pediatric Hematologist/Oncologist
Pubmed
University Medical Center Freiburg

 PPL European Reference Center, Földi Clinic

Robert J. DAMSTRA 4
Dr. Michael OBERLIN
Specialist in internal medicine Wound Management / Lymphology
Pubmed
University Medical Center Hamburg-Eppendorf

HTAD European Reference Center, University Heart Center Hamburg

Yskert VON KODOLITSCH
Pr. Yskert VON KODOLITSCH
Cardiologist
Pubmed
Meike Rybczynski
Dr. Meike RYBCZYNSKI
Cardiologist
Pubmed
Hungary
Semmelweis University

HTAD European Reference Center, Heart and Vascular Center

Zoltan SZABOLCS 1
Pr. Zoltan SZABOLCS
Cardiac Surgeon
Pubmed
Kalman BENKE 1
Dr. Kalman BENKE
Cardiac surgeon
Pubmed
Ireland
Children’s Health Ireland

VASCA European Reference Center, Department of Dermatology

Leo SCHULTZE KOOL 18
Pr. Alan IRVINE
Professor of Dermatology
Pubmed
Leo SCHULTZE KOOL 17
Dr. Veronika DVORAKOVA
Consultant Dermatologist
Pubmed
Italy
Fondazione IRCCS Istituto Neurologico Carlo Besta

NEUROVASC European Reference Center, Neurosurgery Department

Anna BERSANO 2
Dr. Francesco ACERBI
Neurosurgeon
Pubmed
Fondazione IRCCS Policlinico San Matteo Pavia

HTAD European Reference Center, Center for Inherited Cardiovascular Diseases

Eloisa ARBUSTINI
Pr. Eloisa ARBUSTINI
Geneticist
Pubmed
Alessandro DI TORO 1
Dr. Alessandro DI TORO
Physician/Researcher
Pubmed
ASST CREMA – Ospedale Maggiore di Crema

HHT European Reference Center, Gastroenterology and Digestive Endoscopy Unit

Elisabetta BUSCARINI 2
Pr. Elisabetta BUSCARINI
Gastroenterologist
Pubmed
Guido MANFREDI 1
Dr. Guido MANFREDI
Gastroenterologist
Pubmed
Bambino Gesù Children’s Hospital

VASCA European Reference Center, Dermatology Department

Leo SCHULTZE KOOL 16
Dr. Andrea DIOCIAIUTI
Dermatologist
Pubmed
May EL HACHEM
Dr. May EL HACHEM
Dermatologist
Pubmed
Careggi University Hospital

HTAD European Reference Center, Regional Tuscany Reference Center for Marfan Syndrome and related disorders

Betti GIUSTI
Dr. Betti GIUSTI
Molecular Biologist
Pubmed
Azienda Ospedaliero Universitaria Consorziale Policlinico

HHT European Reference Center, Internal medicine

Carlo sabba
Pr. Carlo SABBÀ
Internal medecine
Pubmed
Sophie DUPUIS-GIROD 68
Dr. Gennaro Mariano LENATO
Genetic Biologist
Pubmed
Lithuania
Vilniaus Universiteto ligoninė Santaros Klinikos

VASCA European Reference Center, Center of Vascular and Endovascular Surgery

Leo SCHULTZE KOOL 14
Dr. Birutė VAIŠNYTÉ
Vascular Surgeon
Pubmed
Leo SCHULTZE KOOL 13
Dr. Darius PALIONIS
Radiologist
Pubmed
Netherlands
Amsterdam University Medical Center

HTAD European Reference Center, Department of Cardiology

Maarten GROENINK
Pr. Maarten GROENINK
Cardiologist
Pubmed
Marieke BAARS
Dr. Marieke BAARS
Clinical Geneticist
Pubmed
Erasmus University Medical Center

HTAD European Reference Center, Department of Clinical Genetics and Cardiology

Ingrid VAN DE LAAR 1
Dr. Ingrid VAN DE LAAR
Clinical Geneticist
Pubmed
Martijn KAULING
Dr. Martijn KAULING
Congenital Cardiologist
Pubmed
Erasmus University Medical Center

MSA European Reference Center, Department of Clinical Genetics and Cardiology

Ingrid VAN DE LAAR 1
Dr. Ingrid VAN DE LAAR
Clinical Geneticist
Pubmed
Jolien ROOS-HESSELINK 1
Pr. Jolien ROOS-HESSELINK
Cardiologist
Pubmed
Leiden University Medical Center

NEUROVASC European Reference Center, Department of Clinical Genetics

Saskia LESNIK OBERSTEIN
Dr. Saskia LESNIK OBERSTEIN
Clinical Geneticist
Pubmed
Julie W. Rutten 1
Dr. Julie W. RUTTEN
Clinical Geneticist
Pubmed
Nij Smellinghe hospital

PPL European Reference Center, Expert Center for lymphovascular medecine

Robert J. DAMSTRA 16
Dr. Robert J. DAMSTRA
Dermatologist
Pubmed
Kirsten VAN DUINEN 1
Dr. Kirsten VAN DUINEN
Dermatologist
Pubmed
Radboud University Medical Center

HTAD European Reference Center, Department of Clinical Genetics

Marlies KEMPERS
Dr. Marlies KEMPERS
Clinical Geneticist
Pubmed
Roland VAN KIMMENADE
Dr. Roland VAN KIMMENADE
Cardiologist
Pubmed
Radboud University Medical Center

VASCA European Reference Center, Expert center for Hemangioma and Vascular Anomalies (Hecovan)

Leo SCHULTZE KOOL 23
Pr. Leo SCHULTZE KOOL
Interventional Radiologist
Pubmed
Carine VAN DER VLEUTEN 1
Dr. Carine VAN DER VLEUTEN
Dermatologist
Pubmed
St. Antonius Hospital

HHT European Reference Center, Dutch HHT expertise center

Hans-Jurgen MAGER
Dr. Hans-Jurgen MAGER
Pulmunologist
Pubmed
Norway
Oslo Universitetssykehus

HTAD European Reference Center, Department of Cardiothoracic Surgery and Medical Genetics

Kirsten KROHG-SøRENSEN
Dr. Kirsten KROHG-SøRENSEN
Vascular Surgeon
Pubmed
Benedicte PAUS 1
Pr. Benedicte PAUS
Medical Professor
Pubmed
Oslo Universitetssykehus

MSA European Reference Center, Department for Physical Medicine and Rehabilitation

Nina RIISE 5
Dr. Nina RIISE
Rehabilitation Medicine
Pubmed
Dr. Thy Thy VANEM
Physical Medicine and Rehabilitation Specialist
Pubmed
Oslo Universitetssykehus

VASCA European Reference Centre, Department of Radiology and Nuclear Medicine

Portugal
Centro Hospitalar Universitário de São João

VASCA European Reference Center, Pediatric Oncology Department

Maria BOM SUCESSO 1
Dr. Maria BOM SUCESSO
Pediatric Oncologist
Pubmed
Dr. Antonio Miguel MADUREIRA
Radiologist
Pubmed
Spain
Hospital Sant Joan de Déu Barcelona

VASCA European Reference Center, Dermatology Service

Leo SCHULTZE KOOL 8
Dr. Eulalia BASELAGA TORRES
Pediatric dermatologist
Pubmed
Leo SCHULTZE KOOL 7
Dr. Miguel BEJARANO SERRANO
Pediatric Surgeon
Pubmed
Hospital Universitari Vall d’Hebron

HTAD European Reference Center, Cardiology Unit

Gisela TEIXIDÓ
Dr. Gisela TEIXIDÓ
Cardiologist
Pubmed
Sweden
Karolinska University Hospital

HTAD European Reference Center, Department of Clinical Genetics

Erik BJORCK
Dr. Erik BJORCK
Clinical Geneticist
Pubmed
Karolinska University Hospital

VASCA European Reference Center, Department of Reconstructive Plastic Surgery

Leo SCHULTZE KOOL 6
Dr. Nader GHAFFARPOUR
Pediatric surgeon
Pubmed
Sofia Frisk
Dr. Sofia FRISK
Clinical Geneticist
Pubmed
Uppsala University Hospital

MSA European Reference Center, Department of Medical Sciences

Anders WANHAINEN 1
Dr. Anders WANHAINEN
Vascular Surgeon
Pubmed

AFFILIATED PARTNERS

There are 2 types of affiliated partners:

  1. Associated National Centres (mainly healthcare providers) for those ERNs where an EU Member State is not yet represented by a full member in the respective ERN. It establishes a link with one specific ERN.
  2. A National Coordination Hub which establishes at once a link with more than one Network in which a given Member State is neither represented by a full member nor by an Associated National Centre. National Coordination Hubs may especially represent a useful solution for those Member States with very small populations that need to establish such links with many ERNs at once.

For all documents related to Affiliated Partners see the Board of Member States page here

Associated National Centres

Austria
Medical University of Innsbruck

HTAD European Reference Center, Center for Genetic Aortopathies / Department of Cardiac Surgery

Julia DUMFARTH
Dr. Julia DUMFARTH
Cardiac Surgeon
Pubmed
University Hospital Graz

VASCA European Reference Center, Department of Paediatric and Adolescent Surgery

Leo SCHULTZE KOOL 4
Dr. Paolo GASPARELLA
Pediatric Surgeon
Pubmed
Leo SCHULTZE KOOL 3
Pr. Emir HAXHIJA
Pediatric Surgeon
Pubmed
Cyprus
The Cyprus Institute of Neurology and Genetics

HTAD European Reference Center, Department of Cardiovascular Genetics & Laboratory of Forensic Genetics

Evy BASHIARDES
Dr. Evy BASHIARDES
Molecular Biologist
Pubmed
Anna KERAVNOU
Dr. Anna KERAVNOU
Molecular Biologist
Pubmed
The Cyprus Institute of Neurology and Genetics

MSA European Reference Center, Department of Cardiovascular Genetics & Laboratory of Forensic Genetics

Nina RIISE 1
Dr. George TANTELES
Consultant in Clinical Genetics
Pubmed
Evy BASHIARDES
Dr. Evy BASHIARDES
Molecular Biologist
Pubmed
Slovenia
University Medical Centre Ljubljana

PPL European Reference Center, Dermatovenereological clinic

Tanja PLANINŠEK RUČIGAJ
Dr. Tanja PLANINŠEK RUČIGAJ
Dermatologist
Pubmed
Aleksandra BERGANT 1
Dr. Aleksandra BERGANT SUHODOLČAN
Dermatovenerology Specialist
Pubmed

National Coordination Hubs

Luxembourg
Centre Hospitalier de Luxembourg

HTAD European Reference Center, Department of Cardiac Surgery

Klaus KALLENBACH
Pr. Klaus KALLENBACH
Cardiac Surgeon
Pubmed
Malta
Mater Dei Hospital

HTAD European Reference Center, Department of Cardiology

HCPs FROM THE UNITED KINGDOM WHO ARE NO LONGER MEMBERS OF VASCERN (DUE TO BREXIT)

Following the withdrawal of the United Kingdom from the European Union, the healthcare providers established in the UK ceased to be members of the European Reference Networks as of 1 January 2021 but continue to contribute to the work of VASCERN.

United Kingdom
Derby Teaching Hospitals NHSF Trust

Paediatric and Primary Lymphedema Department

Vaughan KEELEY 1
Dr. Vaughan KEELEY
Lymphoedema Consultant – Collaborating Expert
Pubmed
Katie RICHES
Senior Research Nurse Lymphoedema and Palliative Medicine
Pubmed
Guy’s and St Thomas’ NHS Foundation Trust

South East Thames Regional Genetics Service

Leema ROBERT 1
Dr. Leema ROBERT
Consultant Clinical Genetist – MSA Chair 2017-2021 and Collaborating Expert
Pubmed
Yaso EMMANUEL
Dr. Yaso EMMANUEL
Consultant Cardiologist – Collaborating Expert
Pubmed
Hammersmith Hospital

Imperial College Healthcare NHS Trust

Claire SHOVLIN
Pr. Claire SHOVLIN
Medical specialist and pulmonologist – HHT-WG Chair 2017-2021 and Collaborating Expert
Pubmed
Nicky COOTE
Dr. Nicky COOTE
Consultant paediatrician
Pubmed
St George’s University Hospitals NHS Foundation Trust

Primary and Paediatric Lymphedema Clinic, Dermatology and Clinical Genetics

Sahar MANSOUR 1
Pr. Sahar MANSOUR
Consultant and Honorary Professor in Clinical Genetics – Collaborating Expert
Pubmed
Kristiana GORDON
Dr. Kristiana GORDON
Consultant in Dermatology & Lymphovascular Medicine
Pubmed
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