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:
– 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
During our first year of activities as an official ERN (March 2017-March 2018), monthly meetings have been held for each RDWG, transversal and patient groups, which allowed progress in many of our Work Packages (WP).
List of our Work Packages
WP1 Sharing of experience: discussion of complex clinical cases
WP2 Definition of patient pathways
WP3 Free VASCERN Mobile Application for IOS & Android
WP4 Pills of Knowledge available online (website, youtube)
WP5 Registries
WP6 Clinical trials & Research
WP7 Availability of videos on YouTube
WP8 Definition of clinical outcomes
WP9 Writing Clinical Practice Guidelines (expert consensus statement, recommendations,…)
WP10 Do’s and Don’ts factsheets
WP11 Communication and project management
Our 2nd 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
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
Pr. Julie De BACKER
Pr. Frank VERMASSEN
Center for Medical Genetics Ghent
Ghent University Hospital
Ghent, Belgium
Pr. Bart LOEYS
Center of Medical Genetics
University Hospital of Antwerp
University of Antwerp, Belgium
DENMARK
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
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
Pr. Xavier JEUNEMAITRE
CRMR Rare Vascular Diseases
AP-HP, CHU Paris IdF Ouest, HEGP Hôpital Européen Georges Pompidou
Dr. Stéphane VIGNES
CRMR Rare Vascular Diseases
Primary Lymphedema Expert Unit
Hôpital Cognacq-Jay
Paris, France
Coordinator
Pr. Guillaume JONDEAU
CRMR Marfan Syndrome and related disorders
Service de cardiologie
AP-HP, Hôpital Bichat-Claude Bernard
Paris, France
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. Ulrich SURE
Dr. Freya DROEGE
HHT Center, Essen Center for Rare Diseases
Essen University Hospital
Essen, Germany
Dr. Friedrich Kapp
Physician Scientist
Pr. Dr. Jochen Rößler
Pediatric Hematology/Oncology
Center of Pediatrics and Adolescent Medicine
University Medical Center Freiburg
Freiburg, Germany
and Földi Clinic (special HCP partnership)
European Centre for Lymphology, Merzhausen
HUNGARY
Pr. Zoltan SZABOLCS
Dr. Kalman BENKE
Semmelweis University, Heart and Vascular Center
Budapest, Hungary
IRELAND
ITALY
Pr. Eloisa ARBUSTINI
Center for Inherited Cardiovascular Diseases
IRCCS Foundation Policlino San Matteo
Pavia, Italy
Dr. Fabio PAGELLA
HHT Center, Department of Otorhinolaryngology
IRCCS Foundation Policlino San Matteo
Pavia, 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
Dr. Alessandro PINI
Centro Malattie Rare Cardilogiche – Marfan Clinic
Azienda Socio Sanitaria Territoriale Fatebenefratelli – Sacco
Milan, Italy
Pr. Carlo SABBÀ
Center for Hereditary Haemorrhagic Telangiectasia
Azienda Ospedaliero-Universitaria Consorziale di Bari Policlinico-Giovanni XXIII
Bari, Italy
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
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
UNITED KINGDOM
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. Leema ROBERT
Consultant Clinical Genetist
South East Thames Regional Genetics Service
Dr. Bijan MODARAI
Guy’s Hospital
London, UK
Dr. Claire SHOVLIN
HHT Centre and Service
Hammersmith Hospital, Imperial College Healthcare NHS Trust
London, UK
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
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
FAVA-Multi, the French Network for Rare Multisystemic Vascular Diseases (FAVAmulti.fr)
ESC Eur
opean Society of Cardiology
Aorta and Peripheral Artery WG
Grown-Up Congenital Heart Diseases WG
GADA – Genetic Aortic Disorders Association Canada
Marfan Foundation (US)
GenTAC Alliance
OSSE Open Source Registry System for Rare Diseases
University Medicine Mainz
Medical Informatics
Head: Prof. Dr. F. Ückert
Paris Nord CardioVascular Web Hub 
