Latest News

  • HHT WG Face to Face meeting in London

    HHT WG Face to Face meeting in London

    Mar 22, 2019 0

  • European Platform on Rare Disease Registration (EU RD Platform) launched

    European Platform on Rare Disease Registration (EU RD Platform) launched

    Mar 20, 2019 0

  • French National Rare Disease Networks video available with English subtitles.

    French National Rare Disease Networks video available with English subtitles.

    Mar 15, 2019 0

  • Message from Vytenis Andriukaitis for 2 year Anniversary of ERNs

    Message from Vytenis Andriukaitis for 2 year Anniversary of ERNs

    Mar 15, 2019 0

  • 3 a week Campaign for Marfan Patients – Start moving for your health!

    3 a week Campaign for Marfan Patients – Start moving for your health!

    Mar 12, 2019 0

  • 13 New VASCERN Pills of Knowledge Videos on YouTube!

    13 New VASCERN Pills of Knowledge Videos on YouTube!

    Mar 8, 2019 0

  • VASCERN Spotlights: Alessandro Pini

    VASCERN Spotlights: Alessandro Pini

    Mar 7, 2019 0

  • A look back at Rare Disease Day 2019

    A look back at Rare Disease Day 2019

    Mar 1, 2019 0

  • New collaborative HHT-WG publication on prevention of serious infections in HHT

    New collaborative HHT-WG publication on prevention of serious infections in HHT

    Feb 27, 2019 0

  • PPL-WG Face to Face Meeting in Leuven

    PPL-WG Face to Face Meeting in Leuven

    Feb 26, 2019 0

  • Orphanet text on HHT updated by the VASCERN HHT-WG!

    Orphanet text on HHT updated by the VASCERN HHT-WG!

    Feb 25, 2019 0

  • Give blood for the #myHHTvalentine campaign!

    Give blood for the #myHHTvalentine campaign!

    Feb 5, 2019 0

VASCERN Experts

Dr. Vaughan KEELEY

Consultant Physician

VASCERN PPL European Reference Centre

Paediatric and Primary Lymphedema Department

Derby Teaching Hospitals NHSF Trust
Uttoxeter Road, Derby UK, +44 01332 783075

 

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
Largo Brambilla 3, Florence 50134, Italy (+ 39) 055 794 111

Dr. Saverio Alicante

Gastroenterologist

VASCERN HHT European Reference Centre

Maggiore Hospital, ASST Crema
Largo Ugo Dossena, 2 Crema 26013 Italy +39 (0) 0373280422

Dr. Fransiska Malfait

Clinical Geneticist

VASCERN MSA European Reference Centre

Dept of Cardiology and Center for Medical Genetics Ghent, Ghent University Hospital,
De Pintelaan 185, Ghent 9000, Belgium +329332562

 

Liesbeth WILDERO VAN WOUWE

Genetic counselor

VASCERN HTAD European Reference Centre

Dept of Cardiology and Center for Medical Genetics Ghent, Ghent University Hospital,
De Pintelaan 185, Ghent 9000, Belgium +3293325627

Dr. Aline Verstraeten

 Clinical geneticist

VASCERN HTAD and MSA European Reference Centre

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

 

Dr. David LEFROY

Cardiologist

VASCERN HHT European Reference Centre

Hammersmith Hospital, Imperial College Healthcare NHS Trust London

Du Cane Rd, London W12 0HS, UK +44 020 8383 2279

Dr. Freya DROEGE

ENT-Physician

VASCERN HHT European Reference Centre

Essen Center for Rare Diseases, Essen University Hospital
Hufelandstraße 55, Essen 45147, Germany +49 201 183 3254

Dr. Pernille Torring

Clinical Geneticist

VASCERN HHT European Reference Centre

Odense University Hospital
J. B. Winsløws Vej 4, 5000 Odense, Denmark, +45 66 11 33 33

Prof Yskert VON KODOLITSCH

 Physician

VASCERN HTAD European Reference Centre

Department of Vascular Medicine, Department of General and Interventional Cardiology

University Heart Center Hamburg, University Medical Center Hamburg-Eppendorf
Martinistraße 52, 20251 Hamburg, Germany, +49 (0)40741051528

 

Dr. Katalin Szöcs

 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
Martinistraße 52, 20251 Hamburg, Germany, +49 (0)40741051528

Dr. Kalman BENKE

Cardiac surgeon

VASCERN HTAD European Reference Centre

Heart and Vascular Center, Semmelweis University
Városmajor u. 68, 1122 Budapest, Hungary +36-1-458-6810

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
Il Policlinico si trova in Viale Camillo Golgi 19, Pavia 27100, Italy +39 0382 501206

Dr. Fabio PAGELLA

Audiologist and otolaryngologist

VASCERN HHT European Reference Centre, Department of Otorhinolaryngology

Fondazione IRCCS Policlinico San Matteo
Il Policlinico si trova in Viale Camillo Golgi 19, Pavia 27100, Italy +39 0382 501206

Pr Olivier DUPUIS

Gynecologist obstetrics,

VASCERN HHT European Reference Centre

CHU de Lygion HCL

Dr. Gennaro Mariano Lenato

Clinical Genetist

VASCERN HHT European Reference Centre

Azienda Ospedaliero-Universitaria
Consorziale di Bari Policlinico-Giovanni XXIII,
Via Giovanni Amendola, Bari 207, Italy +39 080 559 1111

Dr. Marco Post

Cardiologist

VASCERN HHT European Reference

Centre, St. Antonius Hospital
Koekoekslaan 1, Nieuwegein 3435, Netherlands +31 88 320 3000

 

Prof. Barbara MULDER

Cardiologist

VASCERN HTAD European Reference Centre

Department of Cardiology, Academic Medical Center
Meibergdreef 9 Amsterdam1105 Netherlands +31 020 566 3794

Prof Jolien ROOS-HESSELINK

Cardiologist

VASCERN HTAD and MSA European Reference Centre

Clinical Genetics and Cardiology, Erasmus Medical Center Rotterdam

 

Dr. Erik BJORCK

Clinical Genetist

VASCERN HTAD European Reference Centr

Clinical Genetics, Karolinska University Hospital

Eugeniavägen 3, 171 76 Stockholm, Sweden +46-8-524 800 00

 

Dr. Yaso Emmanuel

Consultant cardiologist

HTAD European Reference Centre

South East Thames Regional Genetics Service, Guy’s Hospital
Great Maze Pond, London SE1 9RT UK +44 020 7188 1364

 

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
Blackshaw Road, Tooting London SW170QT, UK +44 020 8725 0957

Dr. Florence Belva

Vascular surgeon

VASCERN PPL European Reference Centre

Lymphedema Centre, AZ Sint-Maarten
Liersesteenweg 435, 2800 Mechelen, Belgium +32 015 89 10 10

 

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

 Physician Scientist

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)
Geert Grooteplein 10 Nijmegen6525 Netherlands +31 (024) 361 39 46

 

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 Topeliuksenkatu 5

00260 Helsinki, Finland, +358 9 4544104

 

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

171 76 Stockholm, Sweden +46-8-524 800 00

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

D12 N512 Crumlin, Ireland, +353 1 4096100

Pr. Päivi SALMINEN

Consultant Pediatric Surgeon

VASCERN VASCA European Reference Centre, Department of Pediatric Surgery

Helsinki University Hospital Topeliuksenkatu 5

00260 Helsinki, Finland, +358 9 4544104

 

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)

Geert Grooteplein 10 Nijmegen6525 Netherlands +31 (024) 361 39 46

Pr. Miikka VIKKULA

 Molecular Genetics

VASCERN VASCA European Reference Centre

Vascular Anomalies Center, Cliniques Universitaires Saint-Luc

Katie Riches

 Senior Research Nurse
Lymphoedema and Palliative Medicine

VASCERN PPL European Reference Centre,

Paediatric and Primary Lymphedema Department

Derby Teaching Hospitals NHSF Trust
Uttoxeter Road, Derby UK, +44 01332 783075

 

Pr. Jochen Rößler

Pediatric Hematologist/Oncologist

VASCERN VASCA and PPL European Reference Centre

Center of Pediatrics and Adolescent Medicine, University Medical Center Freiburg
Mathildenstrasse 1, Freiburg 79106, Germany +49 761 270 45060

 

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
20 Rue Leblanc, Paris 75015, France +33 (0) 01 56 09 20 00

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
Liersesteenweg 435, 2800 Mechelen, Belgium +32 015 89 10 10

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
Blackshaw Road, Tooting London SW170QT, UK +44 020 8725 0957

 

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
Great Maze Pond, London SE1 9RT UK +44 020 7188 1364

Dr Ingrid VAN DE LAAR

 Clinical geneticist

VASCERN HTAD and MSA European Reference Centre

Clinical Genetics and Cardiology, Erasmus Medical Center Rotterdam
Doctor Molewaterplein 40, 3015 GD Rotterdam, Netherlands, +31 (0)10 704 0 704

Dr. Marlies KEMPERS

Clinical Geneticist,

VASCERN HTAD European Reference Centre,

Clinical Genetics, Radboud University Medical Center,

Geert Grooteplein 10 Nijmegen6525 Netherlands +31 (024) 361 39 46

Pr. Maarten GROENINK

Cardiologist

VASCERN HTAD European Reference Centre

Department of Cardiology, Academic Medical Center
Meibergdreef 9 Amsterdam1105 Netherlands +31 020 566 3794

Dr. Alessandro PINI

 Cardiologist 

VASCERN HTAD European Reference Centre

Centro Malattie Rare Cardilogiche – Marfan Clinic

Azienda Socio Sanitaria Territoriale Fatebenefratelli – Sacco
Via G.B Grassi,74 Milan 20157, Italy, +39 02 3904 2279

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
Largo Brambilla 3, Florence 50134, Italy (+ 39) 055 794 111

Pr. Eloisa ARBUSTINI

Geneticist

VASCERN HTAD European Reference Centre

Center for Inherited Cardiovascular Diseases, IRCCS Foundation Policlinico San Matteo

Fondazione IRCCS Policlinico San Matteo
Il Policlinico si trova in Viale Camillo Golgi 19, Pavia 27100, Italy +39 0382 501206

Pr. Zoltan SZABOLCS

Cardiac surgeon

VASCERN HTAD European Reference Centre

Heart and Vascular Center, Semmelweis University
Városmajor u. 68, 1122 Budapest, Hungary +36-1-458-6810

Pr. Bart LOEYS

 Clinical cardiogenetics

VASCERN HTAD and MSA European Reference Centre

Center of Medical Genetics, University Hospital of Antwerp University of Antwerp
Prinsstraat 13 Antwerp2000 Belgium +32 3 275 97 74

Pr. Guillaume JONDEAU

 Cardiologist

VASCERN HTAD European Reference Centre

CRMR Marfan Syndrome and related disorders, Service de cardiologie

AP-HP, Hôpital Bichat-Claude Bernard
46 rue Henri Huchard, Paris 75018, France +33 (0) 1 40 25 68 11

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,
De Pintelaan 185, Ghent 9000, Belgium +3293325627

Pr. Carlo SABBÀ

Internal medecine

VASCERN HHT European Reference Centre

Azienda Ospedaliero-Universitaria
Consorziale di Bari Policlinico-Giovanni XXIII,
Via Giovanni Amendola, Bari 207, Italy +39 080 559 1111

Dr. Hans-Jurgen MAGER

Pulmunologist

VASCERN HHT European Reference Centre

St. Antonius Hospital
Koekoekslaan 1, Nieuwegein 3435, Netherlands +31 88 320 3000

Pr. Ulrich SURE

Neurosurgeon

VASCERN HHT European Reference Centre

Essen Center for Rare Diseases, Essen University Hospital
Hufelandstraße 55, Essen 45147, Germany +49 201 183 3254

Pr. Anette KJELDSEN

General clinician

VASCERN HHT European Reference Centre

Odense University Hospital
J. B. Winsløws Vej 4, 5000 Odense, Denmark, +45 66 11 33 33

Pr. Elisabetta BUSCARINI

General clinician

VASCERN HHT European Reference Centre

Maggiore Hospital, ASST Crema

Dr. Sophie DUPUIS-GIROD

General clinician

VASCERN HHT European Reference Centre

CHU de Lygion HCL
59 Boulevard Pinel Lyon, 69500 France +33 (0) 4 27 85 65 24

 

Pr. Claire SHOVLIN

Medical specialist and pulmonologist

VASCERN HHT European Reference Centre, Hammersmith Hospital

Imperial College Healthcare NHS Trust London
Du Cane Rd, London W12 0HS, UK +44 020 8383 2279

 

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

ERN_Banner_European_Commission_V2
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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