Our Network

According to the Directive 2011/24/EU on the application of patients’ rights in cross-border healthcare, the ERN should follow at least 3 of the 8 objectives stated in article 12(2) of the Directive.

Our ERN Board has chosen the following 3 main general objectives:

  1. To help realise the potential of European cooperation regarding highly specialised healthcare for patients and for healthcare systems by exploiting innovations in medical science and health technologies ;
  2. To reinforce research, epidemiological surveillance like registries and provide training for health professionals ;
  3. To encourage the development of quality and safety benchmarks and to help develop and spread best practice within and outside the network.

By following these objectives, VASCERN aims to:
– Reducing the delay in diagnosing the disease;
– Improving awareness for the disease among caregivers (General Practitioners (GPs), school doctors, general public);
– Reducing care gaps/lost-to-follow up during the transition phase from pediatric to adult care;
– Improving the quality of family counseling;
– Reducing redundant tests/increasing the use of relevant tests for the disease;
– Improving medical knowledge by shared experience, and clinical trials.

Find out all about VASCERN expertise here

Governance

Organisational Chart here

Board Terms of Reference / Rules of procedure will be uploaded here

Structure: VASCERN Working Groups

More information on each Working Group’s expertise:  here

VASCERN HCP MEMBERS

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BELGIUM

Pr. Laurence M. BOON
Pr. Miikka VIKKULA
Coordonator Center for Vascular Anomalies
Division of Plastic Surgery
Cliniques universitaires Saint-Luc
Human Molecular Genetics, de Duve Institute
Université catholique de Louvain
Brussels, Belgium

Dr. Sarah THOMIS
Lymphovenous Center
University Hospitals Leuven
Leuven, Belgium

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DENMARK

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FINLAND

Pr. Päivi SALMINEN
MD Director of Rare Diseases Center Rare vascular anomalies programme
Pr. Sinikka SUOMINEN
Department of Plastic Surgery
Head of Breast and Lymphedema teams
Helsinki University Hospital
Helsinki, Finland

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FRANCE

Dr. Sophie DUPUIS-GIROD
CRMR Rendu-Osler Disease HHT Center of Reference
CHU de Lyon HCL – GH Est-Hôpital Femme Mère Enfant
Lyon, France

Network Coordinator

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GERMANY

Pr. Sebastian DEBUS, FEBS, FEBVS, Chairman
Pr. Yskert VON KODOLITSCH
Dr. Christian-Alexander BEHRENDT
Department of Vascular Medicine
Department of General and Interventional Cardiology
University Heart Center Hamburg
University Medical Center Hamburg-Eppendorf
Rarevasc.org
Hamburg, Germany

Pr. Dr. Jochen Rößler
Pediatric Hematology/Oncology
Center of Pediatrics and Adolescent Medicine
University Medical Center Freiburg
Freiburg, Germany

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HUNGARY

Pr. Zoltan SZABOLCS
Dr. Kalman BENKE
Semmelweis University, Heart and Vascular Center
Budapest, Hungary

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IRELAND

Pr. Alan IRVINE
Dermatology Department
Our Lady’s Children’s Hospital Crumlin
Dublin, Ireland

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ITALY

Dr. Andrea DIOCIAIUTI
Resp. Alta Specializzazione Dermatologia Interventistica
Dr. May EL HACHEM
Responsabile UOC di Dermatologia
Bambino Gesù Children’s Hospital, I.R.C.C.S
Rome, Italy

Pr. Guglielmina PEPE
Regional Tuscany Reference Center for Marfan Syndrome and related disorders
Careggi Hospital, University of Florence
Florence, Italy

Pr. Carlo SABBÀ
Center for Hereditary Haemorrhagic Telangiectasia
Azienda Ospedaliero-Universitaria Consorziale di Bari Policlinico-Giovanni XXIII
Bari, Italy

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NETHERLANDS

Dr. Robert J. DAMSTRA
Dermatologist
Pr Raoul C Hennekam (substitute)
Paediatrician and Clinical Geneticist, Academic Medical Center
Expert center for lympho-vascular medicine
Nij Smellinghe hospital
Drachten, Netherlands

Dr. Hans-Jurgen MAGER
Department of Pulmonology
Dutch HHT expertise center
St. Antonius Hospital
Nieuwegein, Netherlands

Pr. Leo SCHULTZE KOOL
Expertcenter for Hemangioma and Vascular Anomalies (Hecovan)
Dr. Marlies KEMPERS
Klinisch Geneticus
Radboud university medical center
Nijmegen, Netherlands

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SWEDEN

Dr. Erik BJORCK
Clinical Genetics
Karolinska Universitetslaboratoriet
Dr. Nader GHAFFARPOUR
Pediatric surgeon
Astrid Lindgren Children’s Hospital
Dept. of pediatric surgery
Karolinska University Hospital
Stockholm, Sweden

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UNITED KINGDOM

Dr. Vaughan KEELEY
Paediatric and primary lymphoedema
Derby Teaching Hospitals NHSF Trust
Derby, UK

Pr. Sahar MANSOUR
Consultant and Honorary Professor in Clinical Genetics
Pr. Peter MORTIMER
Dr. Kristiana Gordon
Dermatologists
Paediatric and Primary Lymphoedema
St George’s University Hospitals
London, UK

Dr. Claire SHOVLIN
HHT Centre and Service
Hammersmith Hospital, Imperial College Healthcare NHS Trust
London, UK

Centers cooperating with VASCERN HCPs

The HCPs member applicants to this ERN project are having functional cooperation with other HCP/Centers ( listed below.) belonging to national and international networks.

Besides, the Network has developed a Strategy for the integration of the future “Affiliated Partners” (Associated national Centers, Collaborative national Centers or national Hubs) from Member States not yet represented in the ERN “full members”, once they will be designated and endorsed by their national governments, as defined by the Board of Member States.

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FRANCE

Dr. Anne DOMPMARTIN
Consultation of Vascular Anomalies- Service Chirurgie Maxillo Faciale, CHU Cote de Nacre
Caen, France

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ITALY

Dr. Massimo VAGHI
U.O. di Chirurgia Vascolare
Centro per lo Studio e la Terapia delle Malformazioni Vascolari Congenite
St. Belov Azienda Ospedaliera “Guido Salvini”
Milan, Italy

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NETHERLANDS

Dr. Yvonne HILHORST-HOFSTEE
Expertise Center Marfan syndrome, Leiden University
Leiden, Netherlands

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ROMANIA

Dr. Ruxandra JURCUT
Expert Center for Rare Cardiovascular Genetic Diseases
Institute for Cardiovascular Diseases “Prof.dr.C.C.Iliescu”
Bucharest, Romania

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SPAIN

Dr. Eulalia BASELGA TORRES
Clinical Director of the Pediatric Dermatology Unit
Director of the Vascular Clinic
Hospital de la Santa Creu i Sant Pau
Barcelona, Spain

Pr. Arturo EVANGELISTA
Head of Cardiac Imaging Department
Dr. Gisela TEIXIDO
Unidad del Síndrome de Marfan
Hospital Universitari Vall d´Hebron
Barcelona, Spain

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SWEDEN

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FAVA-Multi, the French Network for Rare Multisystemic Vascular Diseases (FAVAmulti.fr)

 

ESC Eurlogo ESCopean Society of Cardiology

Aorta and Peripheral Artery WG 

Grown-Up Congenital Heart Diseases WG

 

  GADA – Genetic Aortic Disorders Association Canada

 

 

 

PrintMarfan Foundation (US) 

 

OSSE Open Source Registry System for Rare Diseases
University Medicine Mainz
Medical Informatics
Head: Prof. Dr. F. Ückert

University Hospital Frankfurt
Medical Informatics Group
Head: Dr. H. Storf
Martin Zeitz Center for Rare Diseases
University Medical Center Hamburg-Eppendorf

The Australasian Vascular Audit
Vascular Registries in Australia and New Zealand

The Luxembourg Institute of Health
Cardiovascular Research Unit

The district and local authorities of Hamburg
Public health authority

MediGate GmbH Center
University Medical Center Hamburg-Eppendorf

VASCERN and Centers cooperating

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