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, November 2019)
Structure: VASCERN Working Groups
More information on each Working Group’s expertise: here
HEALTHCARE PROVIDER (HCP) FULL MEMBERS
BELGIUM
Cliniques universitaires Saint-Luc, Brussels, Belgium
VASCERN VASCA European Reference Centre, Center for Vascular Anomalies
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
University Hospital of Antwerp, Antwerp, Belgium
VASCERN HTAD and MSA European Reference Centre, Center of Medical Genetics
University Hospitals Leuven, Leuven, Belgium
VASCERN PPL European Reference Centre, Lymphovenous Center
DENMARK
FINLAND
VASCERN PPL European Reference Centre, Department of Plastic Surgery
VASCERN VASCA European Reference Centre, Department of Pediatric Surgery
FRANCE
CHU de Lyon HCL, GH Est-Hôpital Femme Mère Enfant
Lyon, France
VASCERN HHT European Reference Centre, CRMR Rendu-Osler
VASCERN MSA European Reference Centre, Rare Vascular Diseases Reference Centre (CRMR)
VASCERN PPL European Reference Centre, French Reference Center rare vascular diseases Consortium: Primary Lymphedema Unit, Hôpital Cognacq-Jay
AP-HP, Hôpital Bichat-Claude Bernard, Paris, France
VASCERN HTAD European Reference Centre, CRMR Marfan Syndrome and related disorders, department of cardiology
GERMANY
University Medical Center Hamburg-Eppendorf, Hamburg, Germany
VASCERN HTAD European Reference Centre, University Heart Center Hamburg
Essen University Hospital, Essen, Germany
VASCERN HHT European Reference Centre – Essen Center for Rare Diseases
VASCERN VASCA European Reference Centre, Center of Pediatrics and Adolescent Medicine
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
HUNGARY
Semmelweis University, Budapest, Hungary
VASCERN HTAD European Reference Centre, Heart and Vascular Center
IRELAND
Our Lady’s Children’s Hospital Crumlin, Dublin, Ireland
VASCERN VASCA European Reference Centre, Dermatology Department
ITALY
VASCERN HTAD European Reference Centre, Center for Inherited Cardiovascular Diseases
Bambino Gesù Children’s Hospital, I.R.C.C.S, Rome, Italy
VASCERN VASCA European Reference Centre, Dermatology Department
Careggi Hospital, University of Florence, Florence, Italy
VASCERN HTAD European Reference Centre, Regional Tuscany Reference Center for Marfan Syndrome and related disorders
Azienda Ospedaliero-Universitaria Consorziale di Bari Policlinico-Giovanni XXIII, Bari, Italy
VASCERN HHT European Reference Centre
NETHERLANDS
Nij Smellinghe hospital, Drachten, The Netherlands
VASCERN PPL European Reference Centre, Expert Center for lymphovascular medecine
Academic Medical Center, Amsterdam, Netherlands
VASCERN HTAD European Reference Centre, Department of Cardiology
St. Antonius Hospital, Nieuwegein, The Netherlands
VASCERN HHT European Reference Centre –Dutch HHT expertise center
VASCERN VASCA European Reference Centre, Expert center for Hemangioma and Vascular Anomalies (Hecovan)
VASCERN HTAD European Reference Centre, Department of Clinical Genetics
Erasmus Medical Center, Rotterdam, The Netherlands
VASCERN HTAD and MSA European Reference Centre, Department of Clinical Genetics and Cardiology
SWEDEN
VASCERN VASCA European Reference Centre, Department of Pediatric Surgery
VASCERN HTAD European Reference Centre, Department of Clinical Genetics
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
Hammersmith Hospital, Imperial College Healthcare NHS Trust, London, UK
VASCERN HHT European Reference Centre, VASCERN HHT London
AFFILIATED PARTNERS
There are 2 types of affiliated partners:
- 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.
- 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
AUSTRIA
Medical University Innsbruck, Innsbruck, Austria
Center for Genetic Aortopathies / Department of Cardiac Surgery
CYPRUS
The Cyprus Institute of Neurology and Genetics, Nicosia, Cyprus
Department of Cardiovascular Genetics & Laboratory of Forensic Genetics
SLOVENIA
SPAIN
National Coordination Hubs
LUXEMBOURG
MALTA
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
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
European Society of Cardiology (ESC)
Aorta and Peripheral Artery WG
Grown-Up Congenital Heart Diseases WG
