Output of the RD-Action workshop on Data Standardisation, co-hosted by the European Commission (DG Sante) (April 2017) RD-Action Report on Recommended Practices for Data Standardisation in the Context of the operation of European Reference Network Read the report here
The VASCERN 1st annual seminar will take place in Paris on October 13-14! This event will gather 80 participants, including all our Members for the first time! @VASCERN Follow & tweet with us using #VASCERNdays2017 All our 31 Healthcare Providers Members will be represented by 1 or 2 representatives. 12 …
The Project coordination team based in Paris (Healthcare Provider Coordinating: Assistance Publique Hôpitaux de Paris, Hospital Bichat – Center of Reference for Marfan Syndrome and related disorders) is growing: 2 new VASCERN Coordination team members have joined Prof Guillaume Jondeau and Marine Hurard on September, 19th . The VASCERN team reinforced …
A study published in Orphanet Journal of Rare Diseases analyses the conceptual framework of European Reference Networks, established in the context of the Cross-Border Healthcare Directive (2011/24/EU). This study examines the factors affecting information and knowledge exchange and underlines the role that the ERNs will play in this exchange, with …
Set up a VASCERN free Mobile Application for IOS and Android, which will enable patients and doctors to find & reach out easily all VASCERN centers of expertise and patients associations, with their contacts and information about their expertise: this is one of our first year actions planned! Currently, all …
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 Reference Networks for Rare Diseases: “I also want to harness the potential of a promising new initiative: European Reference Networks …
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 …
