Created in 2017, the European Reference Network on Rare Multisystemic Vascular Diseases (VASCERN) gathers highly specialized expert Healthcare Providers and their multidisciplinary teams, together with patients and the scientific community, to tackle the challenges faced by patients, their families, and clinicians in this area of expertise.

VASCERN’s general goals are to:

  • Increase the knowledge of clinicians and patients thanks to training and education online activities
  • Improve medical knowledge by sharing experience, conducting clinical trials and creating registries
  • Reduce the delay in diagnosing the diseases
  • Improve awareness for the diseasesamong stakeholders, general Practitioners, school doctors,

general public.

  • Improve the quality of family counseling and reduce care gaps

To reach these goals, VASCERN has developed under the EU4Health work programme a work plan with the following 6 work packages:

WP1 Coordination/project management

WP2 Dissemination / communication

WP3 Evaluation of the action implementation

WP4 Sharing experiences : discussion of complex clinical cases

WP5 Other digital activities: Registries and VASCERN mobile app

WP6 Training and Education: Patient pathways, Pills of Knowledge, Moodle platform, Definition of clinical outcomes, Do’s and Don’ts factsheets

All information on our Action Plan, Work Packages’ definitions and our 1st year Deliverables are available on the EU Health Programme Project Database here

Governance

VASCERN Terms of Reference (Board, November 2019)

 

Structure: VASCERN Working Groups

 

 

More information on each Working Group’s expertise:  here

HEALTHCARE PROVIDER (HCP) FULL MEMBERS

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BELGIUM

Cliniques universitaires Saint-Luc,  Brussels, Belgium

VASCERN VASCA European Reference Centre, Center for Vascular Anomalies

Prof. Miikka VIKKULA
Clinical Geneticist

Prof. Laurence M. BOON
Plastic and Reconstructive Surgeon

Ghent University Hospital, Ghent, Belgium

VASCERN HTAD European Reference Centre, Dept of Cardiology and Center for Medical Genetics 

Pr. Julie De BACKER
Cardiologist and clinical geneticist

Liesbeth WILDERO VAN WOUWE
Genetic Couselor

VASCERN MSA European Reference Centre, Dept of Cardiology and Center for Medical Genetics 

Pr. Julie De BACKER
Cardiologist and clinical geneticist

Dr. Fransiska MALFAIT
Clinical geneticist

AZ Sint-Maarten, Mechelen, Belgium

VASCERN PPL European Reference Centre, Lymphedema Centre

Dr. Guido GIACALONE
Vascular Surgeon

Dr. Florence BELVA
Vascular Surgeon

University Hospital of Antwerp, Antwerp, Belgium

VASCERN HTAD and MSA European Reference Centre, Center of Medical Genetics 

Pr. Bart LOEYS
Clinical cardiogeneticist

Dr. Aline VERSTRAETEN
Clinical geneticist

University Hospitals Leuven, Leuven, Belgium

VASCERN PPL European Reference Centre, Lymphovenous Center

Dr. Sarah THOMIS
Vascular Surgeon

Dr. Nele DEVOOGDT
Physiotherapist

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DENMARK

Aarhus Universitets Hospital, Aarhus, Denmark

VASCERN MSA and HTAD European Reference Centre 

Dr. Dorte Gulbrand NIELSEN
Cardiologist

Dr. Pernille GREGERSEN
Clinical Associate Professor

Odense University Hospital, Odense, Denmark

VASCERN HHT European Reference Centre – OUH HHT Centre

Prof. Anette KJELDSEN
Otorhinolaryngologist

Dr. Pernille M TØRRING
Clinical Geneticist

Rigshospitalet, Copenhagen, Denmark

VASCERN PPL European Reference Centre

Dr. Tonny KARLSMARK
Dermatovenereologist

Dr. Hanne BUCIEK HOVE
Clinical Expert

VASCERN VASCA European Reference Centre

Dr. Thomas HJULER
Physician

Dr. Mikkel KALTOFT
Otorhinolaryngologist

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FINLAND

Helsinki University Hospital, Helsinki, Finland

VASCERN PPL European Reference Centre, Department of Plastic Surgery

Prof. Sinikka SUOMINEN 
Plastic Surgeon

Dr. Heli KAVOLA
Plastic Surgeon

VASCERN VASCA European Reference Centre, Department of Pediatric Surgery

Prof. Päivi SALMINEN
Pediatric Surgeon

Adjunct Prof. Kristiina KYRKLUND
Pediatric Surgeon

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SPAIN

Hospital Sant Joan De Déu (SJD Barcelona Children’s Hospital), Barcelona, Spain

VASCERN VASCA European Reference Centre

Dr. Eulalia BASELGA TORRES
Pediatric dermatologist

Dr. Miguel BEJARANO SERRANO
Pediatric Surgeon

Hospital Universitari Vall d’Hebron, Barcelona, Spain

VASCERN HTAD European Reference Centre

Dr. Gisela TEIXIDÓ
Cardiologist

Dr. Arturo EVANGELISTA
Cardiologist

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FRANCE

CHU de Lyon HCL, GH Est-Hôpital Femme Mère Enfant
Lyon, France

VASCERN HHT European Reference Centre, CRMR Rendu-Osler

Dr. Sophie DUPUIS-GIROD
Pediatrician and Geneticist

Dr. Ruben HERMANN
ENT Physician

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

Dr. Michael FRANK
Consultant Cardiologist

Prof. Xavier JEUNEMAITRE
Geneticist

VASCERN PPL European Reference Centre, French Reference Center rare vascular diseases Consortium: Primary Lymphedema Unit, Hôpital Cognacq-Jay

Dr. Stéphane VIGNES
Specialist in Internal Medecine Lymphology

AP-HP nord, Hôpital Lariboisiere, Paris, France

VASCERN VASCA European Reference Centre

Dr. Annouk Anne BISDORFF
Neuroradiologist

Dr. Olivia BOCCARA
Dermatologist and Venerologist

VASCERN NEUROVASC European Reference Centre

Dr. Dominique HERVE
Neurologist

Dr. Hugues CHABRIAT
Neurologist

AP-HPHôpital Bichat-Claude Bernard, Paris, France

VASCERN HTAD European Reference Centre, CRMR Marfan Syndrome and related disorders, department of cardiology

VASCERN Coordinator

Prof. Guillaume JONDEAU
Cardiologist

Dr. Olivier MILLERON
Cardiologist

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GERMANY

University Medical Center Hamburg-Eppendorf, Hamburg, Germany

VASCERN HTAD European Reference Centre, University Heart Center Hamburg

Prof. Yskert VON KODOLITSCH
Cardiologist

Dr. Katalin SZÖCS
Cardiologist

UKGM – Universitätsklinikum, Marburg, Germany

VASCERN HHT European Reference Centre

Prof. Urban GEISTHOFF
Otorhinolaryngologist

Prof. Andreas MAHNKEN
Radiologist

Essen University Hospital, Essen, Germany

VASCERN HHT European Reference Centre – Essen Center for Rare Diseases 

Prof. Ulrich SURE
Neurosurgeon

Dr. Freya DROEGE
ENT Physician

Alfried Krupp Krankenhaus, Ruettenscheid, Germany

VASCERN NEUROVASC European Reference Centre 

Prof. Markus KRAMER
Neurologist

Dr. Frank DIESNER
Neurosurgeon

VASCERN VASCA European Reference Centre, Center of Pediatrics and Adolescent Medicine

Dr. Friedrich KAPP
Pediatric Hematologist/Oncologist

Prof. Jochen RÖßLER
Pediatric Hematologist/Oncologist

VASCERN PPL European Reference Centre, Consortium: European Centre for Lymphology, Földi Clinic, Merzhausen

Dr. Michael OBERLIN
Specialist in internal medicine
Wound Management / Lymphology

Prof. Jochen RÖßLER
Pediatric Hematologist/Oncologist

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HUNGARY

Semmelweis University, Budapest, Hungary

VASCERN HTAD European Reference Centre, Heart and Vascular Center

Prof. Zoltan SZABOLCS
Cardiac Surgeon

Dr. Kalman BENKE
Cardiac surgeon

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IRELAND

Our Lady’s Children’s Hospital Crumlin, Dublin, Ireland

VASCERN VASCA European Reference Centre, Dermatology Department

Prof. Alan IRVINE
Professor of Dermatology

Dr. Veronika DVORAKOVA
Consultant Dermatologist

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ITALY

Fondazione IRCCS Istituto Neurologico Carlo Besta di Milano, Milan, Italy

VASCERN NEUROVASC European Reference Centre

Dr. Anna BERSANO
Neurologist

Dr. Eugenio PARATI
Neurologist

VASCERN HTAD European Reference Centre, Center for Inherited Cardiovascular Diseases

Prof. Eloisa ARBUSTINI
Geneticist

Dr. Alessandro DI TORO
Physician/Researcher

Maggiore Hospital, ASST Crema, Crema, Italy

VASCERN HHT European Reference Centre

Prof.  Elisabetta BUSCARINI
Gastroenterologist

Dr. Guido MANFREDI
Gastroenterologist

Bambino Gesù Children’s Hospital, I.R.C.C.S, Rome, Italy

VASCERN VASCA European Reference Centre, Dermatology Department

Dr. Andrea DIOCIAIUTI
Dermatologist

Dr. Maya EL HACHEM
Dermatologist

Careggi Hospital, University of Florence, Florence, Italy

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

Prof. Guglielmina PEPE
Clinical Pathologist

Dr. Betti GIUSTI
Molecular Biologist

Prof. Carlo SABBÀ
Internal medecine

Dr. Gennaro Mariano LENATO
Genetic Biologist

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LITHUANIA

 

Vilniaus Universiteto ligoninė Santaros Klinikos, Vilnius, Lithuania

VASCERN VASCA European Reference Centre

Dr. Birutė VAIŠNYTé
Vascular Surgeon

Dr. Darius PALIONIS
Radiologist

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NETHERLANDS

Nij Smellinghe hospital, Drachten, The Netherlands

VASCERN PPL European Reference Centre, Expert Center for lymphovascular medecine

Dr. Robert J. DAMSTRA
Dermatologist

Dr. Kirsten VAN DUINEN
Dermatologist

Academic Medical Center, Amsterdam, Netherlands

VASCERN HTAD European Reference Centre, Department of Cardiology

Prof. Maarten GROENINK
Cardiologist

Dr. Marieke BAARS
Clinical Geneticist

St. Antonius Hospital, Nieuwegein, The Netherlands

VASCERN HHT European Reference Centre –Dutch HHT expertise center

Dr. Hans-Jurgen MAGER
Pulmunologist

Dr. Marco POST
Cardiologist

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

Prof. Leo SCHULTZE KOOL
Interventional Radiologist

Dr. Carine VAN DER VLEUTEN
Dermatologist

VASCERN HTAD European Reference Centre, Department of Clinical Genetics

Dr. Marlies KEMPERS
Clinical Geneticist

Dr. Roland VAN KIMMENADE
Cardiologist

Erasmus Medical Center, Rotterdam, The Netherlands

VASCERN HTAD and MSA European Reference Centre, Department of Clinical Genetics and Cardiology

Dr. Ingrid VAN DE LAAR
Clinical Geneticist

Prof. Jolien ROOS-HESSELINK
Cardiologist

Leiden University Medical Center, Leiden, Netherlands

VASCERN NEUROVASC European Reference Centre

Dr. Saskia LESNIK OBERSTEIN
Clinical Genetist

Prof. Gisela TERWINDT
Neurologist

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PORTUGAL

Centro Hospitalar Universitário de São João, Porto, Portugal

VASCERN MSA European Reference Centre

Dr. Maria BOM SUCESSO
Pediatric Oncologist

Dr. Antonio Miguel MADUREIRA
Radiologist

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NORWAY

Oslo Universitetssykehus, Oslo, Norway

VASCERN VASCA European Reference Centre 

Dr. Rune ANDERSEN
Radiologist

Dr. Sigurd BERGER
Radiologist

VASCERN HTAD European Reference Centre

Dr. Kirsten KROHG-SøRENSEN
Vascular Surgeon

Prof. Benedicte PAUS
Medical Professor

VASCERN MSA European Reference Centre

Dr. Nina RIISE
Rehabilitation Medecine

Dr. Synnøve KVALHEIM
Physical Medecine

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SWEDEN

Dr. Nader GHAFFARPOUR
Pediatric surgeon

Prof. Filip FARNEBO
Plastic surgeon

VASCERN HTAD European Reference Centre, Department of Clinical Genetics

Dr. Erik BJORCK
Clinical Geneticist

Dr. Edit NAGY
Cardiologist

Akademiska sjukhuset – Uppsala University Hospital, Stockholm, Sweden

VASCERN MSA European Reference Centre

Dr. Anders WANHAINEN 
Physician

Dr. Anna STENBORG
Physician

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 Statement States page here

Associated National Centres

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AUSTRIA

University Hospital Graz, Graz, Austria

Department of Paediatric and Adolescent Surgery

Dr. Paolo GASPARELLA
Pediatric Surgeon

Prof. Emir HAXHIJA
Pediatric Surgeon

 Medical University Innsbruck, Innsbruck, Austria

Center for Genetic Aortopathies / Department of Cardiac Surgery

Dr. Julia DUMFARTH
Cardiac Surgeon

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CYPRUS

     The Cyprus Institute of Neurology and Genetics, Nicosia, Cyprus

Department of Cardiovascular Genetics & Laboratory of Forensic Genetics

Dr. Evy BASHIARDES
Molecular Biologist

Dr. George TANTELES
Consultant in Clinical Genetics

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SLOVENIA

University Medical Centre Ljubljana, Ljubljana, Slovenia

Dermatovenereological clinic

Dr. Tanja PLANINŠEK RUČIGAJ
Dermatologist

National Coordination Hubs

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LUXEMBOURG

Prof. Klaus KALLENBACH
Cardiac Surgeon

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MALTA

Mater Dei Hospital, Msida, Malta

Dr. Maryanne CARUANA
Cardiologist

Dr. Kevin CASSAR
Vascular Surgeon

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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.

Derby Teaching Hospitals NHSF Trust, Derby, UK

VASCERN PPL European Reference Centre, Paediatric and Primary Lymphedema Department

Dr. Vaughan KEELEY
Lymphoedema Consultant

Katie RICHES
Senior Research Nurse
Lymphoedema and Palliative Medicine

 St George’s University Hospitals, London, UK

VASCERN PPL European Reference Centre, Primary and Paediatric lymphedema clinic, Dermatology and Clinical Genetics

Prof. Sahar MANSOUR
Consultant and Honorary Professor in Clinical Genetics

Dr. Kristiana GORDON
Consultant in Dermatology & Lymphovascular Medicine

Guy’s Hospital, London, UK

VASCERN MSA and HTAD European Reference Centre, South East Thames Regional Genetics Service

Dr. Leema ROBERT
Consultant Clinical Genetist

Dr. Yaso EMMANUEL
Consultant Cardiologist

Hammersmith Hospital, Imperial College Healthcare NHS Trust, London, UK

VASCERN HHT European Reference Centre, VASCERN HHT London

Prof.  Claire SHOVLIN
Medical specialist and pulmonologist

Dr. Nicky COOTE
Consultant paediatrician

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Based in the HealthCare Provider Coordinator: Assistance Publique-Hôpitaux de Paris, Hôpital Bichat, France

Prof Guillaume JONDEAU
VASCERN Coordinator
Cardiologist, Coordinator Centre of Reference (CRMR) for Marfan Syndrome and related disorders
Coordinator FAVA-Multi, French Rare Multisystemic Vascular Diseases Network
guillaume.jondeau@aphp.fr

Julie HALLAC
VASCERN Project Manager
julie.hallac@aphp.fr
+33 (0)1 40 25 80 66

Treasure UDECHUKWU
VASCERN Communications Project Officer
treasure.udechkwu@aphp.fr
+33 (0)1 40 25 70 76

Yaël GLIN
VASCERN Project Officer
vascern.coordination@aphp.fr
+33 (0)1 40 25 70 77

Operational Helpdesk for the ERN IT Services (Clinical Patient Management System, ERN Collaborative Platform and videoconference tools)

Ibrahim DONMEZ
VASCERN IT Helpdesk & End User Support Specialist
ibrahim.donmez@aphp.fr
+33 (0)1 40 25 67 22

cpms.vascern@aphp.fr

Provides help to our members in using the CPMS for clinical complex cases discussions, the ECP and the videoconference tools

Pim KAMERLING
VASCERN Data Steward
Radboud University Medical Center, Nijmegen, Netherlands
Pim.Kamerling@radboudumc.nl

VASCERN HCP Members & Affiliated Partners

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