This is the VASCERN Specific Grant Agreement Proposal for the second year of operation of the ERN (from March 2018 to February 2019), under the VASCERN Framework Partnership Agreement (FPA) 2017-2021.
VASCERN Network Coordinator is Prof. Guillaume JONDEAU, Cardiologist at the Assistance Publique-Hôpitaux de Paris (AP-HP), Hôpital Bichat-Claude Bernard, CRMR (Center of Reference) Marfan Diseases and related disorders.
VASCERN aims to facilitate and improve diagnosis, treatment and care for all patients suffering from rare multisystemic vascular diseases.
The European Reference Network on rare multisystemic vascular diseases (VASCERN) gathers European highly specialized multidisciplinary Healthcare Providers (HCPs) in this thematic area of expertise.
VASCERN includes 5 Rare Diseases Working Groups (RDWGs):
- Heritable Thoracic Aortic Diseases (HTAD-WG)
- Hereditary Haemorrhagic Telangiectasia (HHT-WG)
- Medium Sized Arteries (vascular Ehlers Danlos) (MSA-WG)
- Pediatric and Primary Lymphedemas (PPL-WG)
- Vascular Anomalies (VASCA-WG)
The specific VASCERN Patient Group (ePAG) enables Patient representatives to work on common issues and to be
involved in all activities.
In addition, several transversal Working Groups work on: eHealth, Training & Education, Patient Registry,
Ethics, Communication / Dissemination.
Our Action Plan for this second year will enable VASCERN to carry on with its work and reinforce its activities with regard to various Work Packages such as: Case discussion on the Clinical Patient Management System (CPMS), Patient Pathways, Clinical Guidelines / recommendations, Mobile Application (improvements), Patient Registry & clinical outcome measures, Communication (improvements), Training & Education, Pills of Knowledge, Clinical trials & research.