Latest News

  • VASCERN Spotlights: Professor Miikka Vikkula

    VASCERN Spotlights: Professor Miikka Vikkula

    Mar 29, 2018

  • Start of VASCERN’s 2nd Year Activities

    Start of VASCERN’s 2nd Year Activities

    Mar 28, 2018

  • First Patients Enrolled in the CPMS for VASCERN!

    First Patients Enrolled in the CPMS for VASCERN!

    Mar 27, 2018

  • EU Consultation on the future EU Research Programme FP9

    EU Consultation on the future EU Research Programme FP9

    Mar 24, 2018

  • VASCERN is looking for an Administrative Assistant and is now on LinkedIn!

    VASCERN is looking for an Administrative Assistant and is now on LinkedIn!

    Mar 16, 2018

  • Results from the Rare Barometer Voices survey on Patients’ Participation in Research

    Results from the Rare Barometer Voices survey on Patients’ Participation in Research

    Mar 15, 2018

  • New collaborative HTAD-WG publication

    New collaborative HTAD-WG publication

    Mar 12, 2018

  • A look back at Rare Disease Day 2018

    A look back at Rare Disease Day 2018

    Mar 6, 2018

  • Position Statement from the ERN Coordinators Group on UK’s Involvement in ERNs

    Position Statement from the ERN Coordinators Group on UK’s Involvement in ERNs

    Mar 1, 2018

  • One Year Anniversary of the European Reference Networks!

    One Year Anniversary of the European Reference Networks!

    Mar 1, 2018

  • VASCERN 1st Year Deliverables Submitted!

    VASCERN 1st Year Deliverables Submitted!

    Feb 27, 2018

  • First HTAD-WG Pill of Knowledge Published!

    First HTAD-WG Pill of Knowledge Published!

    Feb 27, 2018

VASCERN Experts

Dr. Nader GHAFFARPOUR

Pediatric surgeon
Astrid Lindgren Children’s Hospital
Dept. of pediatric surgery
Karolinska University Hospital
Stockholm, Sweden

Dr. Andrea DIOCIAIUTI

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

Pr. Alan IRVINE

Dermatology Department
Our Lady’s Children’s Hospital Crumlin
Dublin, Ireland

Pr. Päivi SALMINEN

MD Director of Rare Diseases Center Rare vascular anomalies programme
Helsinki University Hospital
Helsinki, Finland

Pr. Leo SCHULTZE KOOL
Pr. Leo SCHULTZE KOOL

Expertcenter for Hemangioma and Vascular Anomalies (Hecovan)
Radboud university medical center
Nijmegen, Netherlands

Pr. Miikka VIKKULA
Pr. Miikka VIKKULA

and Pr. Laurence M. BOON, 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. Vaughan KEELEY
Dr. Vaughan KEELEY

Paediatric and primary lymphoedema
Derby Teaching Hospitals NHSF Trust
Derby, UK

Pr. Dr. Jochen Rößler
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

Dr. Stéphane VIGNES
Dr. Stéphane VIGNES

Primary Lymphedema Unit, CRMR Rare Vascular Diseases
Hôpital Cognacq-Jay
Paris, France

Pr. Sinikka SUOMINEN
Pr. Sinikka SUOMINEN

Department of Plastic Surgery
Head of Breast and Lymphedema teams
Helsinki University Hospital
Helsinki, Finland

Dr. Sarah THOMIS
Dr. Sarah THOMIS

Lymphovenous Center
University Hospitals Leuven
Leuven, Belgium

Dr. Guido GIACALONE
Dr. Guido GIACALONE

Lymphedema Centre, AZ Sint-Maarten
Mechelen, Belgium

Pr. Sahar MANSOUR
Pr. Sahar MANSOUR

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

Dr. Robert J. DAMSTRA
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

Pr. Xavier JEUNEMAITRE
Pr. Xavier JEUNEMAITRE

CRMR Rare Vascular Diseases
AP-HP, CHU Paris IdF Ouest, HEGP Hôpital Européen Georges Pompidou
Paris, France

Dr. Leema ROBERT
Dr. Leema ROBERT

Consultant Clinical Genetist
South East Thames Regional Genetics Service
Dr. Bijan MODARAI
Guy’s Hospital
London, UK

Dr. Erik BJORCK
Dr. Erik BJORCK

Clinical Genetics
Karolinska Universitetslaboratoriet
Karolinska University Hospital
Stockholm, Sweden

Dr Ingrid VAN DE LAAR
Dr Ingrid VAN DE LAAR

and Pr. Jolien ROOS-HESSELINK
Erasmus Medical Center
Rotterdam, The Netherlands

Dr. Marlies KEMPERS
Dr. Marlies KEMPERS

Klinisch Geneticus
Radboud university medical center
Nijmegen, Netherlands

Pr. Maarten GROENINK
Pr. Maarten GROENINK

and Pr. Barbara MULDER
Academic Medical Center
Amsterdam, Netherlands

Dr. Alessandro PINI
Dr. Alessandro PINI

Centro Malattie Rare Cardilogiche – Marfan Clinic
Azienda Socio Sanitaria Territoriale Fatebenefratelli – Sacco
Milan, Italy

Pr. Guglielmina PEPE
Pr. Guglielmina PEPE

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

Pr. Zoltan SZABOLCS
Pr. Zoltan SZABOLCS

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

Pr. Sebastian DEBUS
Pr. Sebastian DEBUS

and 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. Bart LOEYS
Pr. Bart LOEYS
Pr. Guillaume JONDEAU
Pr. Guillaume JONDEAU
Pr. Carlo SABBÀ
Pr. Carlo SABBÀ

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

Dr. Fabio PAGELLA
Dr. Fabio PAGELLA

and Dr. Sara UGOLINI
HHT Center, Department of Otorhinolaryngology
Fondazione IRCCS Policlinico San Matteo, University of Pavia
Pavia, Italy

Dr. Hans-Jurgen MAGER
Dr. Hans-Jurgen MAGER

Department of Pulmonology
Dutch HHT expertise center
St. Antonius Hospital
Nieuwegein, The Netherlands

Pr. Ulrich SURE
Pr. Ulrich SURE

and Dr. Freya DROEGE
HHT Center, Essen Center for Rare Diseases 
Essen University Hospital
Essen, Germany

Pr. Anette KJELDSEN
Pr. Anette KJELDSEN
Pr. Elisabetta BUSCARINI
Pr. Elisabetta BUSCARINI

HHT Center, Maggiore Hospital, ASST Crema
Crema, Italy

Dr. Sophie DUPUIS-GIROD
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. Claire SHOVLIN
Pr. Claire SHOVLIN

VASCERN HHT London
Hammersmith Hospital, Imperial College Healthcare NHS Trust
London, UK

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“Our VASCERN project aims to facilitate and improve diagnosis, treatment and care for ALL patients suffering from Rare Multisystemic Vascular Diseases, thus enhancing access to care, and improving quantity and quality of life of these patients.
Networking, sharing and spreading our expertise, promoting best practices, guidelines and clinical outcomes, patient-empowerment, improving knowledge through clinical and basic research are among our objectives.”

Prof. Guillaume Jondeau, Network Coordinator

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VASCERN is one of the 24 European Reference Networks (ERNs) on rare diseases that have been approved in December 2016, following the first ERN Call for proposal (European Commission, DG Health, March 2016) and have been officially launched in March 2017. Our ERN on Rare Multisystemic Vascular Diseases gathers 31 highly specialized multidisciplinary Healthcare Providers (HCPs) from 11 EU Member States in this area of expertise. VASCERN is coordinated by Prof. Guillaume Jondeau, Cardiologist and Coordinator of the Center of Reference for Marfan Syndrome and related disorders, AP-HP Hôpital Bichat, Paris, France.

VASCERN includes five Rare Diseases Working Groups: Hereditary Haemorrhagic Telangiectasia (HHT-WG), Heritable Thoracic Aortic Diseases (HTAD-WG), Medium Sized Arteries (vascular Ehlers Danlos Syndrome) (MSA-WG), Pediatric and Primary Lymphedema (PPL-WG), Vascular Anomalies (VASCA-WG). This scope will enlarge to include all Rare Multisystemic Vascular Diseases. The specific Patient-WG enables Patient representatives to work on common issues and to be involved in all activities. In addition, several Thematic Working Groups are established to better tackle transversal work packages on: communication, eHealth, ethics, patient registry, and training & education.

All our HCP Members are Centers of Reference/Excellence recognized in their countries. These HCP have developed extensive European collaborations through their specific Rare Diseases’ networks. They joined this ERN to foster and reinforce European cooperation in Rare Multisystemic Vascular Diseases, following a common and multidisciplinary approach to patient care, in order to overcome the challenges of rarity.

They are committed to improve diagnosis, treatment, and care for and with patients by using all opportunities and activities, which can be offered by VASCERN.

Find out all information about our Network

All you need to know about ERNs

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VASCERN is a European Reference Network (ERN) approved by the ERN Board of Member States. The ERNs are co-funded by the European Commission. For more information about the ERNs and the EU health strategy, please visit http://ec.europa.eu/health/ern.

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