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:
– Reducing the delay in diagnosing the disease;
– Improving awareness for the disease among caregivers (General Practitioners (GPs), school doctors, general public);
– Reducing care gaps/lost-to-follow up during the transition phase from pediatric to adult care;
– Improving the quality of family counseling;
– Reducing redundant tests/increasing the use of relevant tests for the disease;
– Improving medical knowledge by shared experience, and clinical trials.

Find out all about VASCERN expertise here

During our first year of activities as an official ERN (March 2017-March 2018), monthly meetings have been held for each RDWG, transversal and patient groups, which allowed progress in many of our Work Packages (WP).

List of our Work Packages

WP1 Sharing of experience: discussion of complex clinical cases 

WP2 Definition of patient pathways

WP3 Free VASCERN Mobile Application for IOS & Android

WP4 Pills of Knowledge available online (website, youtube)

WP5 Registries

WP6 Clinical trials & Research

WP7 Availability of videos on YouTube

WP8 Definition of clinical outcomes

WP9 Writing Clinical Practice Guidelines (expert consensus statement, recommendations,…)

WP10 Do’s and Don’ts factsheets

WP11 Communication and project management

Our 2nd 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, October 2017)

 

Structure: VASCERN Working Groups

More information on each Working Group’s expertise:  here

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BELGIUM

Pr. Laurence M. BOON
Pr. Miikka VIKKULA
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. Sarah THOMIS
Lymphovenous Center
University Hospitals Leuven
Leuven, Belgium

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DENMARK

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FINLAND

Pr. Päivi SALMINEN
MD Director of Rare Diseases Center Rare vascular anomalies programme
Pr. Sinikka SUOMINEN
Department of Plastic Surgery
Head of Breast and Lymphedema teams
Helsinki University Hospital
Helsinki, Finland

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FRANCE

Dr. Sophie DUPUIS-GIROD
CRMR Rendu-Osler Disease HHT Center of Reference
CHU de Lyon HCL – GH Est-Hôpital Femme Mère Enfant
Lyon, France

allemagne

GERMANY

Pr. Sebastian DEBUS, FEBS, FEBVS, Chairman
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. Ulrich SURE
Dr. Freya DROEGE
HHT Center, Essen Center for Rare Diseases 
Essen University Hospital
Essen, Germany

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

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HUNGARY

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

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IRELAND

Pr. Alan IRVINE
Dermatology Department
Our Lady’s Children’s Hospital Crumlin
Dublin, Ireland

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ITALY

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

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

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

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NETHERLANDS

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

Dr. Hans-Jurgen MAGER
Department of Pulmonology
Dutch HHT expertise center
St. Antonius Hospital
Nieuwegein, Netherlands

EN

Pr. Leo SCHULTZE KOOL
Expertcenter for Hemangioma and Vascular Anomalies (Hecovan)
Dr. Marlies KEMPERS
Klinisch Geneticus
Radboud university medical center
Nijmegen, Netherlands

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SWEDEN

Dr. Erik BJORCK
Clinical Genetics
Karolinska Universitetslaboratoriet
Dr. Nader GHAFFARPOUR
Pediatric surgeon
Astrid Lindgren Children’s Hospital
Dept. of pediatric surgery
Karolinska University Hospital
Stockholm, Sweden

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UNITED KINGDOM

Dr. Vaughan KEELEY
Paediatric and primary lymphoedema
Derby Teaching Hospitals NHSF Trust
Derby, UK

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

Dr. Claire SHOVLIN
HHT Centre and Service
Hammersmith Hospital, Imperial College Healthcare NHS Trust
London, UK

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Based in Hôpital Bichat, Assistance Publique-Hôpitaux de Paris, FRANCE

Prof Guillaume JONDEAU
VASCERN Coordinator
Cardiologist, Coordinator Centre of Reference (CRMR) for Marfan Syndrome and related disorders
Department of Cardiology, Hôpital Bichat, Assistance Publique-Hôpitaux de Paris
Coordinator FAVA-Multi, French Rare Multisystemic Vascular Diseases Network

guillaume.jondeau@aphp.fr

Marine HURARD
VASCERN Project Manager
marine.hurard@aphp.fr
+33 (0)1 40 25 80 66

Natasha BARR
VASCERN Project Officer
natasha.barr@aphp.fr
+33 (0)1 40 25 70 76

Job offer: VASCERN Project Assistant
vascern.secretariat@aphp.fr
+33 (0)1 40 25 70 77

Financial Partnerships

 


Non-financial partnerships

 

logo_fava-multi_coul_petit

 

FAVA-Multi, the French Network for Rare Multisystemic Vascular Diseases (FAVAmulti.fr)

 

ESC Eurlogo ESCopean Society of Cardiology

Aorta and Peripheral Artery WG 

Grown-Up Congenital Heart Diseases WG

 

  GADA – Genetic Aortic Disorders Association Canada

 

 

 

PrintMarfan Foundation (US) 

 

OSSE Open Source Registry System for Rare Diseases
University Medicine Mainz
Medical Informatics
Head: Prof. Dr. F. Ückert

 Paris Nord CardioVascular Web Hub 

VASCERN and Centers cooperating

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