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
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
VASCERN VASCA European Reference Centre
FINLAND
VASCERN PPL European Reference Centre, Department of Plastic Surgery
VASCERN VASCA European Reference Centre, Department of Pediatric Surgery
FRANCE
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
VASCERN NEUROVASC European Reference Centre
CHU de Lyon HCL, GH Est-Hôpital Femme Mère Enfant
Lyon, France
VASCERN HHT European Reference Centre, CRMR Rendu-Osler
GERMANY
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
University Medical Center Hamburg-Eppendorf, Hamburg, Germany
VASCERN HTAD European Reference Centre, University Heart Center Hamburg
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
Fondazione IRCCS Istituto Neurologico Carlo Besta di Milano, Milan, Italy
VASCERN NEUROVASC European Reference Centre
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
LITHUANIA
Vilniaus Universiteto ligoninė Santaros Klinikos, Vilnius, Lithuania
VASCERN VASCA European Reference Centre
NETHERLANDS
Academic Medical Center, Amsterdam, Netherlands
VASCERN HTAD European Reference Centre, Department of Cardiology
Erasmus Medical Center, Rotterdam, The Netherlands
VASCERN HTAD and MSA European Reference Centre, Department of Clinical Genetics and Cardiology
Nij Smellinghe hospital, Drachten, The Netherlands
VASCERN PPL European Reference Centre, Expert Center for lymphovascular medecine
VASCERN VASCA European Reference Centre, Expert center for Hemangioma and Vascular Anomalies (Hecovan)
VASCERN HTAD European Reference Centre, Department of Clinical Genetics
St. Antonius Hospital, Nieuwegein, The Netherlands
VASCERN HHT European Reference Centre –Dutch HHT expertise center
NORWAY
VASCERN VASCA European Reference Centre
VASCERN HTAD European Reference Centre
VASCERN MSA European Reference Centre
PORTUGAL
Centro Hospitalar Universitário de São João, Porto, Portugal
VASCERN VASCA European Reference Centre
SPAIN
Hospital Sant Joan De Déu (SJD Barcelona Children’s Hospital), Barcelona, Spain
VASCERN VASCA European Reference Centre
SWEDEN
Akademiska sjukhuset – Uppsala University Hospital, Stockholm, Sweden
VASCERN MSA European Reference Centre
VASCERN VASCA European Reference Centre
VASCERN HTAD European Reference Centre
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
National Coordination Hubs
LUXEMBOURG
MALTA
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
Hammersmith Hospital, Imperial College Healthcare NHS Trust, London, UK
VASCERN HHT European Reference Centre, VASCERN HHT London
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
Treasure UDECHUKWU
VASCERN Communications Project Officer
treasure.udechkwu@aphp.fr
+33 (0)1 40 25 70 76
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
