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 lymphedema guidelines based on the International Classification of Functioning, Disability, and Health and the chronic care model, Journal of Vascular Surgery, …
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 by Sophie Dupuis-Girod, Vincent Cottin, C.L. Shovlin Respiration 2017;94:315-330 (DOI:10.1159/000479632) has been chosen to be the free access article (Editor’s Choice) of Vol. 94, No. …
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) are virtually meeting every month since the official launch of VASCERN in March 2017, in order to work on all …
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
