This proposal answer the ERN call 2016 and FPA, for the ERN on Rare Multisystemic Vascular Diseases.
The ERN is coordinated by the ERN Network Coordinator, Pr. Guillaume JONDEAU - AP-HP, Hôpital Bichat-Claude Bernard, CRMR Marfan Diseases and related disorders (Centre de Référence Maladies Rares Syndrome de Marfan et apparentés).
Our ERN 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.
The European Reference Network project on Rare Multisystemic Vascular Diseases gathers European highly specialized multidisciplinary Healthcare Providers (HCPs) in this thematic area of expertise. The Network includes specific Rare Diseases Working Groups: Heritable Thoracic Aortic Diseases, HHT, Medium Sized Arteries (vascular Ehlers Danlos), Pediatric and Primary Lymphedemas, Vascular Anomalies (VASCA). The specific Patients-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 issues on: eHealth, Training & Education, Patient Registry, Ethics, and Communication.
HCPs have developed extensive European collaborations through their specific Rare Diseases’ networks. They join this ERN Project proposal 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 patients by using all opportunities and activities, which can be offered by the ERN Project.