Last News

  • HHT new scientific publication

    HHT new scientific publication

    We are proud to report that a new publication by our HHT-WG Chair Prof Claire Shovlin, the British Thoracic Society …

    Nov 22, 2017

    enabled
  • The ERN Clinical Patient Management System (CPMS) is officially launched!

    The ERN Clinical Patient Management System (CPMS) is officially launched!

    The much anticipated Clinical Patient Management System (CPMS) was released by the European Commission (DG SANTE) on Monday, November 20th, …

    Nov 20, 2017

    enabled
  • Rare Disease UK Survey

    Rare Disease UK Survey

    Rare disease UK has created a survey for rare disease patients and their families.

    The goal is to gather valuable information about …

    Nov 19, 2017

    enabled
  • HHT ePAG Meeting

    HHT ePAG Meeting

    During the HHT Europe annual meeting, which took place in Hamburg this month, the HHT patient organisations members of our …

    Nov 18, 2017

    enabled
  • European Medicines Agency (EMA) in Amsterdam

    European Medicines Agency (EMA) in Amsterdam

    It was announced on November 20th, 2017 that the European Medicines Agency (EMA) will relocate to Amsterdam. This agency plays …

    Nov 16, 2017

    enabled
  • Parliamentary Advocates for Rare Diseases

    Parliamentary Advocates for Rare Diseases

    Eurordis has launched the network of Parliamentary Advocates for Rare Diseases. This network of European and national Members of Parliament …

    Nov 15, 2017

    enabled
  • VASCERNdays2017: Success of our First Annual Seminar!

    VASCERNdays2017: Success of our First Annual Seminar!

    More than 80 participants gathered during the VASCERN days 2017, our 1st 2 days Annual Seminar, which took place in Paris …

    Oct 31, 2017

    enabled
  • VASCERN is now on Facebook!

    VASCERN is now on Facebook!

    The VASCERN coordination team is very happy to announce that we now have an official Facebook page!

    As planned in our 1st year …

    Oct 31, 2017

    enabled
  • VASCERN YouTube Channel is launched

    VASCERN YouTube Channel is launched

    The  availability of conferences on YouTube via the VASCERN YouTube Channel is part of our first year action plan (Work …

    Oct 31, 2017

    enabled
  • Health in the digital society, Message from EU Commissioner for Health

    Health in the digital society, Message from EU Commissioner for Health

    ‘Health in the digital society’ conference, Tallinn, 17 October 2017
    Message from Vytenis Andriukaitis, European Commissioner for Health and Food Safety
    “The …

    Oct 29, 2017

    enabled
  • Rare Barometer Voice: make your voice heard on Rare Disease Research

    Rare Barometer Voice: make your voice heard on Rare Disease Research

    Rare Barometer Voice is a EURORDIS initiative.
    “Rare Barometer Voices is a community of people living with a rare disease who …

    Oct 24, 2017

    enabled
  • Report: 5th International Summer School on Rare Disease Registries

    Report: 5th International Summer School on Rare Disease Registries

    Read the Report from RD-Connect of the Rare Diseases Registries Summer School, which took place in Rome in September.

    VASCERN was …

    Oct 18, 2017

    enabled

“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

LogoOnly

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

LogoOnly

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

All you need to know about ERNs

ERN_Banner_European_Commission_V2