EU Commissioner for Health on ERNs

At the occasion of the 18th European Day for Organ Donation and Transplantation, Vytenis Andriukaitis, EU Commissioner for Health and Food Safety, highlighted during his speech the added-value of European… Read more »

Dutch Lymphedema Guidelines

Read the new article on the Dutch Lymphedema guidelines by our Pediatric and Primary Lymphedema Chair, Dr Robert Damstra (the Dutch Working Group on Lymphedema): Damstra RJ, Halk A-B. The Dutch… Read more »

New HHT-WG Publication

A new scientific publication by Dr Sophie Dupuis-Girod, HHT-WG Co-chair and Dr Claire Shovlin, HHT-WG Chair, has been published: The Lung in Hereditary Hemorrhagic Telangiectasia,  Respiration 2017;94:- (DOI: 10.1159/000479632)  http://www.karger.com/DOI/10.1159/000479632… Read more »

VASCERN Meetings

VASCERN 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)… Read more »

EU Consultation on eHealth

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… Read more »

ERNs new videos

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

VASCERN ePAG meeting in Budapest

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… Read more »

eHealth Call for ERNs

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… Read more »