Latest News

  • Interview with Daria Julkowska, European Joint Programme on Rare Diseases (EJP-RD) coordinator

    Interview with Daria Julkowska, European Joint Programme on Rare Diseases (EJP-RD) coordinator

    Aug 19, 2019 0

  • Tackling rare diseases a ‘European success story’, states CEO of Eurordis Yann Le Cam

    Tackling rare diseases a ‘European success story’, states CEO of Eurordis Yann Le Cam

    Aug 19, 2019 0

  • Research News: Vascular Anomalies Working Group (VASCA WG) Collaborative Publication

    Research News: Vascular Anomalies Working Group (VASCA WG) Collaborative Publication

    Jul 29, 2019 0

  • First ERN Newsletter published!

    First ERN Newsletter published!

    Jul 8, 2019 0

  • Bakoumba: Translation of Marfan Children’s book

    Bakoumba: Translation of Marfan Children’s book

    Jul 1, 2019 0

  • Research News: New Heritable Thoracic Aortic Diseases Working Group (HTAD WG) Collaborative Publication

    Research News: New Heritable Thoracic Aortic Diseases Working Group (HTAD WG) Collaborative Publication

    Jun 27, 2019 0

  • New patient advocate for Pediatric and Primary Lymphedema (PPL)

    New patient advocate for Pediatric and Primary Lymphedema (PPL)

    Jun 26, 2019 0

  • New translations of Do’s and Don’ts Factsheets for Marfan Syndrome and Related Disorders (by the Heritable Thoracic Aortic Working Group – HTAD WG) now available!

    New translations of Do’s and Don’ts Factsheets for Marfan Syndrome and Related Disorders (by the Heritable Thoracic Aortic Working Group – HTAD WG) now available!

    Jun 25, 2019 0

  • New translations of Do’s and Don’ts factsheets for Pediatric and Primary Lymphedema (by the PPL-WG) now now available!

    New translations of Do’s and Don’ts factsheets for Pediatric and Primary Lymphedema (by the PPL-WG) now now available!

    Jun 25, 2019 0

  • VASCERN at the 5th annual FAVA-Multi Day!

    VASCERN at the 5th annual FAVA-Multi Day!

    Jun 13, 2019 0

  • VASCERN Spotlights: Dr Sophie Dupuis-Girod

    VASCERN Spotlights: Dr Sophie Dupuis-Girod

    Jun 5, 2019 0

  • A look back at the Vascular Anomalies Working Group (VASCA WG) face-to-face meeting!

    A look back at the Vascular Anomalies Working Group (VASCA WG) face-to-face meeting!

    Jun 4, 2019 0

VASCERN Experts

Dr Peder SORENSSON

Pediatric surgeon

VASCERN VASCA European Reference Centre

Department of Pediatric Surgery, Karolinska University Hospital

Dr Janneke TIMMERMANS

Cardiologist

VASCERN HTAD European Reference Centre

Clinical Genetics, Radboud University Medical Center

Dr. Vaughan KEELEY

Consultant Physician

VASCERN PPL European Reference Centre

Paediatric and Primary Lymphedema Department

Derby Teaching Hospitals NHSF Trust

Dr. Betti GIUSTI

Molecular Biologist, Associate Professor of Clinical Pathology

VASCERN HTAD European Reference Centre

Regional Tuscany Reference Center for Marfan Syndrome and related disorders

Careggi Hospital, University of Florence

Dr. Saverio ALICANTE

Gastroenterologist

VASCERN HHT European Reference Centre

Maggiore Hospital, ASST Crema

Dr. Fransiska MALFAIT

Clinical Geneticist

VASCERN MSA European Reference Centre

Dept of Cardiology and Center for Medical Genetics Ghent, Ghent University Hospital,

 

Liesbeth WILDERO VAN WOUWE

Genetic counselor

VASCERN HTAD European Reference Centre

Dept of Cardiology and Center for Medical Genetics Ghent, Ghent University Hospital,

Dr. Aline VERSTRAETEN

Clinical geneticist

VASCERN HTAD and MSA European Reference Centre

Center of Medical Genetics, University Hospital of Antwerp University of Antwerp

 

 

Dr. Nicky COOTE

Pediatrician

VASCERN HHT European Reference Centre

Hammersmith Hospital, Imperial College Healthcare NHS Trust London

 

Dr. Freya DROEGE

ENT-Physician

VASCERN HHT European Reference Centre

Essen Center for Rare Diseases, Essen University Hospital

Dr. Pernille TORRING

Clinical Geneticist

VASCERN HHT European Reference Centre

Odense University Hospital

Prof Yskert VON KODOLITSCH

Cardiologist

VASCERN HTAD European Reference Centre

Department of Vascular Medicine, Department of General and Interventional Cardiology

University Heart Center Hamburg, University Medical Center Hamburg-Eppendorf

 

Dr. Katalin SZOCS

Cardiologist

VASCERN HTAD European Reference Centre

Department of Vascular Medicine, Department of General and Interventional Cardiology

University Heart Center Hamburg, University Medical Center Hamburg-Eppendorf

Dr. Kalman BENKE

Cardiac surgeon

VASCERN HTAD European Reference Centre

Heart and Vascular Center, Semmelweis University

Dr. Olivier MILLERON

Cardiologist

VASCERN HTAD European Reference Centre

CRMR Marfan Syndrome and related disorders,

Service de cardiologie, AP-HP, Hôpital Bichat-Claude Bernard

Dr. Susan MARELLI

Clinician Genetist

VASCERN HTAD European Reference Centre

Centro Malattie Rare Cardilogiche –

Marfan Clinic, Azienda Socio Sanitaria Territoriale Fatebenefratelli – Sacco

Dr. Alessandro DI TORO

Physician Researcher,

VASCERN HTAD European Reference Center for Inherited Cardiovascular Diseases

IRCCS Foundation Policlinico San Matteo

Fondazione IRCCS Policlinico San Matteo

 

Dr. Fabio PAGELLA

Audiologist and otolaryngologist

VASCERN HHT European Reference Centre, Department of Otorhinolaryngology

Fondazione IRCCS Policlinico San Matteo

Pr Olivier DUPUIS

Gynecologist obstetrics,

VASCERN HHT European Reference Centre

CHU de Lyon HCL

Dr. Gennaro MARIANO LENATO

Clinical Genetist

VASCERN HHT European Reference Centre

Azienda Ospedaliero-Universitaria
Consorziale di Bari Policlinico-Giovanni XXIII,

Dr. Marco POST

Cardiologist

VASCERN HHT European Reference

Centre, St. Antonius Hospital

 

Dr Marieke BAARS

Clinical Geneticist,

VASCERN HTAD European Reference Centre

Department of Cardiology, Academic Medical Center Amsterdam

 

Prof Jolien ROOS-HESSELINK

Cardiologist

VASCERN HTAD and MSA European Reference Centre

Clinical Genetics and Cardiology, Erasmus Medical Center Rotterdam

Nederland, Rotterdam, 07-05-2012
Jolien Roos Hesselink, cardioloog Erasmus MC
Mirjam van der Hoek

 

Dr. Erik BJORCK

Clinical Genetist

VASCERN HTAD European Reference Centr

Clinical Genetics, Karolinska University Hospital

 

Dr. Emmanuel YASO

Consultant cardiologist

HTAD European Reference Centre

South East Thames Regional Genetics Service, Guy’s Hospital

 

Dr. Kirsten VAN DUINEN

Dematologist

VASCERN PPL European Reference Centre

Expert Center for Lympho-vascular Medicine, Nij Smellinghe hospital

 

Dr. Kristiana GORDON

Consultant in dermatology and Lymphovascular Medecine

VASCERN PPL European Reference Centre, Primary and Paediatric lymphedema clinic

Dermatology and Clinical Genetics, St George’s University Hospitals

 

Dr. Florence BELVA

Vascular surgeon

VASCERN PPL European Reference Centre

Lymphedema Centre, AZ Sint-Maarten, Mechelen, Belgium

 

Dr. Nele DEVOOGDT

Physiotherapist

VASCERN PPL European Reference Centre

Lymphovenous Center, University Hospitals Leuven

Dr. Michael FRANK

Cardiologist

VASCERN MSA European Reference Centre

Rare Vascular Diseases Reference Centre

AP-HP, HEGP Hôpital Européen Georges Pompidou

Dr. Michael OBERLIN

Specialist in internal medicine, Wound Management Lymphology

VASCERN PPL European Reference Centre

Consortium: University Medical Center, Freiburg, Freiburg, Germany and Földi Clinic

European Centre for Lymphology, Merzhausen, Germany

Dr. Friedrich KAPP

Pediatrician

VASCERN VASCA European Reference Centre

Center of Pediatrics and Adolescent Medicine, University Medical Center Freiburg

Pr. Laurence M. BOON

Plastic and microsurgery Surgeon

Coordinator of the Center for Vascular Anomalies

VASCERN VASCA European Reference Centre, Vascular Anomalies Center

Cliniques Universitaires Saint-Luc

Dr. Carine VAN DER VLEUTEN

Dermatologist

VASCERN VASCA European Reference Centre

Radboudumc Expert center for Hemangioma and Vascular Anomalies (Hecovan)

Dr. Heli KAVOLA

Plastic Surgeon

VASCERN PPL European Reference Centre

Department of Plastic Surgery, Helsinki University Hospital

 

 

Prof. Sinikka SUOMINEN

Plastic Surgeon

VASCERN PPL European Reference Centre,

Department of Plastic Surgery, Helsinki University Hospital

Dr. Kristiina KYRKLUND

Pediatric Surgeon

VASCERN VASCA European Reference Centre

Department of Pediatric Surgery, Helsinki University Hospital

 

 

 

Dr. Veronika DVORAKOVA

Consultant Dermatologist

VASCERN VASCA European Reference Centre

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

 

 

Dr. May EL HACHEM

Dermatologist

VASCERN VASCA European Reference Centre

UOC di Dermatologia Bambino Gesù Children’s Hospital

Dr. Nader GHAFFARPOUR

Pediatric surgeon

VASCERN VASCA European Reference Centre, Department of Pediatric Surgery

Karolinska University Hospital Eugeniavägen 3

 

Dr. Andrea DIOCIAIUTI

Interventionnal dermatologist

VASCERN VASCA European Reference Centre

UOC di Dermatologia Bambino Gesù Children’s Hospital

Pr. Alan IRVINE

Professor in Dermatology

VASCERN VASCA European Reference Centre

Dermatology Department, Our Lady’s Children’s Hospital Crumlin James’s Street

Pr. Päivi SALMINEN

Consultant Pediatric Surgeon

VASCERN VASCA European Reference Centre, Department of Pediatric Surgery

Helsinki University Hospital Topeliuksenkatu 5

 

 

Pr. Leo SCHULTZE KOOL

Professor of Interventional Radiology, expert center for Hemangioma and Vascular Anomalies

VASCERN VASCA European Reference Centre

Radboudumc Expert center for Hemangioma and Vascular Anomalies (Hecovan), Nijmegen

Pr. Miikka VIKKULA

Molecular Genetics

VASCERN VASCA European Reference Centre

Vascular Anomalies Center, Cliniques Universitaires Saint-Luc, Bruxelles

Katie RICHES

Senior Research Nurse

Lymphoedema and Palliative Medicine

VASCERN PPL European Reference Centre,

Paediatric and Primary Lymphedema Department

Derby Teaching Hospitals NHSF Trust

 

Pr. Jochen RÖSSLER

Pediatric Hematologist/Oncologist

VASCERN VASCA and PPL European Reference Centre

Center of Pediatrics and Adolescent Medicine, University Medical Center Freiburg

 

Dr. Stéphane VIGNES

Internist expert in Lymphology

VASCERN PPL European Reference Centre, Consortium: AP-HP, HEGP Hôpital européen Georges Pompidou

French Reference Center rare vascular diseases, Primary Lymphedema Unit

Hôpital Cognacq-Jay, Paris

Dr. Sarah THOMIS

Vascular surgeon

VASCERN PPL European Reference Centre

Lymphovenous Center, University Hospitals Leuven

Dr. Guido GIACALONE

Vascular surgeon

VASCERN PPL European Reference Centre

Lymphedema Centre, AZ Sint-Maarten, Mechelen

Pr. Sahar MANSOUR

Consultant and Honorary Professor in Clinical Genetics

VASCERN PPL European Reference Centre, Primary and Paediatric lymphedema clinic

Dermatology and Clinical Genetics, St George’s University Hospitals, London

 

Dr. Robert J. DAMSTRA

Dermatologist

VASCERN PPL European Reference Centre

Expert Center for Lympho-vascular Medicine

Nij Smellinghe hospital

Pr. Xavier JEUNEMAITRE

Geneticist

VASCERN MSA European Reference Centre

Rare Vascular Diseases Reference Centre, AP-HP

HEGP Hôpital Européen Georges Pompidou

Dr. Leema ROBERT

Clinical Genetist,

VASCERN MSA and HTAD European Reference Centre

South East Thames Regional Genetics Service, Guy’s Hospital, London

Dr Ingrid VAN DE LAAR

Clinical geneticist

VASCERN HTAD and MSA European Reference Centre

Clinical Genetics and Cardiology, Erasmus Medical Center Rotterdam

Dr. Marlies KEMPERS

Clinical Geneticist,

VASCERN HTAD European Reference Centre,

Clinical Genetics, Radboud University Medical Center, Nijmegen

Pr. Maarten GROENINK

Cardiologist

VASCERN HTAD European Reference Centre

Department of Cardiology, Academic Medical Center, Amsterdam

 

Dr. Alessandro PINI

Cardiologist

VASCERN HTAD European Reference Centre

Centro Malattie Rare Cardilogiche – Marfan Clinic

Azienda Socio Sanitaria Territoriale Fatebenefratelli

Pr. Guglielmina PEPE

Clinical Pathologist

VASCERN HTAD European Reference Centre

Regional Tuscany Reference Center for Marfan Syndrome and related disorders

Careggi Hospital, University of Florence

Pr. Eloisa ARBUSTINI

Geneticist

VASCERN HTAD European Reference Centre

Center for Inherited Cardiovascular Diseases, IRCCS Foundation Policlinico San Matteo

Fondazione IRCCS Policlinico San Matteo

Pr. Zoltan SZABOLCS

Cardiac surgeon

VASCERN HTAD European Reference Centre

Heart and Vascular Center, Semmelweis University

Pr. Bart LOEYS

Clinical cardiogenetics

VASCERN HTAD and MSA European Reference Centre

Center of Medical Genetics, University Hospital of Antwerp University of Antwerp

Pr. Guillaume JONDEAU

Cardiologist

VASCERN HTAD European Reference Centre

CRMR Marfan Syndrome and related disorders, Service de cardiologie

AP-HP, Hôpital Bichat-Claude Bernard, Paris

Pr. Julie De BACKER

Cardiologist and clinical geneticist

VASCERN HTAD and MSA European Reference Centre

Dept of Cardiology and Center for Medical Genetics Ghent, Ghent University Hospital,

Pr. Carlo SABBÀ

Internal medecine

VASCERN HHT European Reference Centre

Azienda Ospedaliero-Universitaria
Consorziale di Bari Policlinico

Dr. Hans-Jurgen MAGER

Pulmunologist

VASCERN HHT European Reference Centre

St. Antonius Hospital, Nieuwegein

Pr. Ulrich SURE

Neurosurgeon

VASCERN HHT European Reference Centre

Essen Center for Rare Diseases, Essen University Hospital

Pr. Anette KJELDSEN

General clinician

VASCERN HHT European Reference Centre

Odense University Hospital

Pr. Elisabetta BUSCARINI

General clinician

VASCERN HHT European Reference Centre

Maggiore Hospital, ASST Crema

Dr. Sophie DUPUIS-GIROD

Paediatrician and  geneticist

VASCERN HHT European Reference Centre

CHU de Lyon HCL

 

Pr. Claire SHOVLIN

Medical specialist and pulmonologist

VASCERN HHT European Reference Centre, Hammersmith Hospital

Imperial College Healthcare NHS Trust London

 

LogoOnly

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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