A novel blood vessel disorder and its genetic cause discovered Researchers in the group of Prof M. Vikkula of the de Duve Institute in close collaboration with the Vascular Anomalies Center (Prof Laurence Boon) and the Center for Human Genetics (Dr Nicole Revencu), both at Cliniques universitaires Saint-Luc, discovered a …
The European Commission has launched a open consultation on digital transformation of health and care. Cross-border access to and management of personal health data; A joint European exploitation of resources (digital infrastructure, data capacity), to accelerate research and to advance prevention, treatment and personalised medicine; Measures for widespread uptake of …
The European Commission has released four new video testimonials from rare diseases patients, explaining how European Reference Networks for Rare Diseases help them. More info here Watch the videos here
A training version of the Clinical Patient Management System for European Reference Networks on Rare Diseases has been released by the European Commission in July. This training version is currently tested by the ERNs.
During the EURORDIS Membership Meeting in Budapest on May 19 – 20, some of our VASCERN ePAG (European Patient Advocacy Group) representatives had the opportunity to meet, and to share with all ePAG groups challenges & achievements in engaging with new ERNs. Besides this face-to-face meeting in the framework of the EURORDIS Membership Meeting, …
The report of the European Reference Networks launch Conference, held in Vilnius on March 9-10th has been published. Read the report here
The European Commission (INEA Agency) has launched a Connecting Europe Facility (CEF) Telecom Call on eHealth for European Reference Networks on May 6th. This call for ERNs aims to facilitate the connection between members of ERNs by ensuring the adequate and efficient use of the ERN Core Services (Clinical Patient …
VASCERN Members are invited to create a EU login and access the VASCERN Collaborative IT Platform here !
The first VASCERN Annual Assembly and Board Meeting will take place in October 13-14th in Paris!
The European Reference Network Project “EU collaboration to help patients with rare diseases” led by the ERN Team of the European Commission (DG SANTE) has received the European Ombudsman Award for Good Administration 2017! More information here
