VASCERN Coordination Team is growing!

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…

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ERNs: a conceptual framework of cross-border healthcare

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…

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VASCERN Mobile APP

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…

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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 Reference Networks for Rare Diseases: “I also want to harness the potential of a promising new initiative: European Reference Networks…

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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 lymphedema guidelines based on the International Classification of Functioning, Disability, and Health and the chronic care model, Journal of Vascular Surgery,…

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Research News: 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 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.…

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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) are virtually meeting every month since the official launch of VASCERN in March 2017, in order to work on all…

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Research News: VASCA-WG new scientific publication

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…

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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 (digital infrastructure, data capacity), to accelerate research and to advance prevention, treatment and personalised medicine; Measures for widespread uptake of…

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