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 has chosen to pursue 3 main goals:

Goal 1: 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

Goal 2: Reinforce research, epidemiological surveillance like registries and provide training for healthcare professionals

Goal 3: Encourage the development of quality and safety benchmarks and help develop and spread best practice within and outside the European Reference Network

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

Find out all about VASCERN expertise here

During our first and second year of activities as an official ERN (March 2017-March 2019), monthly meetings were held for each RDWG, transversal and patient groups, which allowed progress in many of our Work Packages (WP).

The outputs/deliverables for Year 1 have been published here

The outputs/deliverables for Year 2 have been published here

Under the 5 year Framework Partnership Agreement (FPA) with the European Commission, VASCERN signed the new Specific Grant Agreement (SGA) for Years 3-5 (March 2019 to February 2022) that started on March 1st, 2019.

List of our Work Packages for Years 3-5:

WP1 Coordination/project management

WP2 Dissemination / communication

WP3 Evaluation of the action implementation

WP4 Sharing experiences : discussion of complex clinical cases

WP5 Patient pathways : improvements and updates

WP6 Mobile Application

WP7 Pills of Knowledge

WP8 Registries

WP9 Clinical trials & Research

WP10 Availability of videos on Youtube

WP11 Multidisciplinary school for multisystemic vascular disease (Year 5)

WP12 Definition of clinical outcomes

Our 3rd year will enable VASCERN to consolidate and reinforce its structure and mode of operation, as well as to keep on working on these various Work Packages.

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, October 2017)

 

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
Molecular Geneticist

Prof. Laurence M. BOON
Plastic and Microsurgery 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

Odense University Hospital, Odense, Denmark

VASCERN HHT European Reference Centre – OUH HHT Centre

Prof. Anette KJELDSEN
Otorhinolaryngologist

Dr. Pernille M TØRRING
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
Consultant Pediatric Surgeon

Dr. Kristiina KYRKLUND
Pediatric Surgeon

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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 clinician

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-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

allemagne

GERMANY

University Medical Center Hamburg-Eppendorf, Hamburg, Germany

VASCERN HTAD European Reference Centre, University Heart Center Hamburg

Dr. Katalin SZÖCS
Cardiologist

Essen University Hospital, Essen, Germany

VASCERN HHT European Reference Centre – Essen Center for Rare Diseases 

Prof. Ulrich SURE
Neurosurgeon

Dr. Freya DROEGE
ENT Physician

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

Dr. Friedrich KAPP
Physician Scientist

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

VASCERN HTAD European Reference Centre, Center for Inherited Cardiovascular Diseases

Dr. Alessandro DI TORO
Physician/Researcher

VASCERN HHT European Reference Centre – Department of Otorhinolaryngology

Dr. Fabio PAGELLA
Audiologist and otolaryngologist

Dr. Sara UGOLINI
ENT Physician

Maggiore Hospital, ASST Crema, Crema, Italy

VASCERN HHT European Reference Centre

Prof.  Elisabetta BUSCARINI
Gastroenterologist

Dr. Saverio ALICANTE
Gastroenterologist

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

VASCERN VASCA European Reference Centre, Dermatology Department

Dr. Andrea DIOCIAIUTI
Interventional Dermatologist

Dr. May 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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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

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. Janneke TIMMERMANS
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

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SWEDEN

VASCERN VASCA European Reference Centre, Department of Pediatric Surgery

Dr. Nader GHAFFARPOUR
Pediatric surgeon

Dr. Peder SORENSSON
Pediatric surgeon

VASCERN HTAD European Reference Centre, Department of Clinical Genetics

Dr. Erik BJORCK
Clinical Geneticist

Dr. Edit NAGY
Cardiologist

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UNITED KINGDOM

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

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

CaptureAustria

AUSTRIA

University Hospital Graz, Graz, Austria

Department of Paediatric and Adolescent Surgery

Dr. Paolo GASPARELLA
Pediatric Surgeon

Pr Emir HAXHIJA
Pediatric Surgeon

 

Captureslovenia

SLOVENIA

University Medical Centre Ljubljana, Ljubljana, Slovenia

Dermatovenereological clinic

Dr. Tanja PLANINŠEK RUČIGAJ
Dermatologist

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SPAIN

Dr Arturo EVANGELISTA
Cardiologist

Dr Gisela TEIXIDÓ
Cardiologist

National Coordination Hubs

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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

Marine HURARD
VASCERN Project Manager
marine.hurard@aphp.fr
+33 (0)1 40 25 80 66

Natasha BARR
VASCERN Project Officer
natasha.barr@aphp.fr
+33 (0)1 40 25 70 76

Anne-Marie DEFO
VASCERN Project Assistant
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

Help our members to use the CPMS for clinical complex cases discussions, the ECP and the videoconference tools

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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) 

 

 

GenTAC Alliance

www.gentacalliance.org 

 

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

 Paris Nord CardioVascular Web Hub 

VASCERN HCP Members & Affiliated Partners

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