VASCERN is one of the 24 European Reference Networks (ERNs) on rare diseases that were approved in December 2016, following the first ERN Call for proposals (European Commission, DG Health, March 2016) and that were officially launched in March 2017. Our ERN on Rare Multisystemic Vascular Diseases currently gathers 48 expert teams from 39 highly specialized multidisciplinary Healthcare providers (HCPs) plus 6 affiliated partner centers, coming from 19 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 six 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), and Neurovascular Diseases (NEUROVASC). This scope will enlarge to include all Rare Multisystemic Vascular Diseases. The European Patient Advocacy Group (ePAG) 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: communication, ethics, patient registry, and pregnancy.
All our HCP Members are Expert Centers recognized in their countries. These HCPs 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 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.