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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

All you need to know about ERNs

Last News

  • EU Commissioner for Health on ERNs

    EU Commissioner for Health on ERNs

    At the occasion of the 18th European Day for Organ Donation and Transplantation, Vytenis Andriukaitis, EU Commissioner for Health and …

    Sep 11, 2017 0

    enabled
  • Dutch Lymphedema Guidelines

    Dutch Lymphedema Guidelines

    Read the new article on the Dutch Lymphedema guidelines by our Pediatric and Primary Lymphedema Chair, Dr Robert Damstra (the …

    Sep 4, 2017 0

    enabled
  • New HHT-WG Publication

    New HHT-WG Publication

    A new scientific publication by Dr Sophie Dupuis-Girod, HHT-WG Co-chair and Dr Claire Shovlin, HHT-WG Chair, has been published:

    The Lung …

    Sep 4, 2017 0

    enabled
  • VASCERN Meetings

    VASCERN Meetings

    VASCERN five Rare Diseases Working Groups (Hereditary Haemorrhagic Telangiectasia (HHT-WG), Heritable Thoracic Aortic Diseases (HTAD-WG), Medium Sized Arteries (vascular Ehlers …

    Jul 28, 2017 0

    enabled
  • VASCA-WG new scientific publication

    VASCA-WG new scientific publication

    A novel blood vessel disorder and its genetic cause discovered

    Researchers in the group of Prof M. Vikkula of the de …

    Jul 28, 2017 0

    enabled
  • EU Consultation on eHealth

    EU Consultation on eHealth

    The European Commission has launched a open consultation on digital transformation of health and care.

    Cross-border access to and management …

    Jul 28, 2017 0

    enabled
  • ERNs new videos

    ERNs new videos

    The European Commission has released four new video testimonials from rare diseases patients, explaining how European Reference Networks for Rare …

    Jul 28, 2017 0

    enabled
  • ERNs Clinical Patient Management System

    ERNs Clinical Patient Management System

    A training version of the Clinical Patient Management System for European Reference Networks on Rare Diseases has been released by …

    Jul 25, 2017 0

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  • VASCERN ePAG meeting in Budapest

    VASCERN ePAG meeting in Budapest

    During the EURORDIS Membership Meeting in Budapest on May 19 – 20, some of our VASCERN ePAG (European Patient Advocacy Group) representatives had …

    May 31, 2017 0

    enabled
  • eHealth Call for ERNs

    eHealth Call for ERNs

    The European Commission (INEA Agency) has launched a Connecting Europe Facility (CEF) Telecom Call on eHealth for European Reference Networks …

    May 31, 2017 0

    enabled
  • Members Area available!

    Members Area available!

    VASCERN Members are invited to create a EU login and access the VASCERN Collaborative IT Platform

    Apr 28, 2017 0

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  • VASCERN Annual Meeting: 13-14 October 2017

    VASCERN Annual Meeting: 13-14 October 2017

    The first VASCERN Annual Assembly and Board Meeting will take place in October 13-14th in

    Apr 28, 2017 0

    enabled
  • ERN Project wins European Ombudsman Award

    ERN Project wins European Ombudsman Award

    The European Reference Network Project “EU collaboration to help patients with rare diseases” led by the ERN Team of the European …

    Apr 28, 2017 0

    enabled
  • Patients’ Rights in EU Cross-border Healthcare

    Patients’ Rights in EU Cross-border Healthcare

    Information on patients’ rights with regard to cross-border healthcare in the European Union:

    Leaflet on Patients’ Rights in Cross-Border Healthcare

    Mar 28, 2017 0

    enabled
  • What are ERNs? All EU Languages available

    What are ERNs? All EU Languages available

    European Reference Networks are gathering the best expertise to improve care in Rare Diseases in Europe.

    24 ERNs covering all major …

    Mar 16, 2017 0

    enabled
  • The ERNs Launch in Vilnius

    The ERNs Launch in Vilnius

    More photos & live tweets on the VASCERN twitter moment of the Conference here

    VASCERN is back from the European Reference Networks …

    Mar 13, 2017 0

    enabled
  • Follow VASCERN on Twitter!

    Follow VASCERN on Twitter!

    VASCERN has now a twitter account ! Follow

    Feb 27, 2017 0

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  • European Reference Networks Conference

    European Reference Networks Conference

    The European Commission organises the 3rd European Reference Networks Conference in Vilnius on March, 9-10th. This event will be the …

    Feb 20, 2017 0

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  • EURORDIS 20th anniversary

    EURORDIS 20th anniversary

    2017 is EURORDIS-Rare Diseases Europe, the European association representing rare diseases, 20th anniversary. This is the opportunity to look at …

    Feb 6, 2017 0

    enabled
  • PPL-WG New Publications

    PPL-WG New Publications

    New collaborative publications have been published these last months by the Chairs of VASCERN Pediatric and Primary Lymphedema Working Group, …

    Jan 27, 2017 0

    enabled
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VASCERN, the European Reference Network 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

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The first European Reference Networks (ERNs) on Rare Diseases have been approved in December 2016, following the first ERN Call for proposal (European Commission, DG Health, March 2016) and will be launched officially in March 2017 in Vilnius.

Among 24 ERNs, the European Reference Network on Rare Multisystemic Vascular Diseases, VASCERN, has been validated and successfully received the ERN label.

The ERNs aim to facilitate and improve access to diagnosis and treatment in rare or low prevalence complex diseases or conditions by pooling existing highly specialised Healthcare Providers/Centers of Excellence across the EU. They will share knowledge, experience, medical research, teaching, training, resources and use relevant communication and eHealth tools to make expertise travel rather than the patients. This will also reduce inequalities of treatment within the EU.

Find out all information about the ERNs here

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