VASCERN DAYS 2018 is almost here!

The much anticipated event is almost here: VASCERN Days 2018 will take place next week, from October 11-12, 2018, in Paris, France! VASCERN’s second annual seminar will be a chance for all of our members to meet face to face and reflect on all of the hard work that has been…

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VASCERN Spotlights: Professor Claire Shovlin

VASCERN Spotlights: Professor Claire Shovlin I hope that across the diseases that VASCERN champions, the wisdom, dedication and experience of the medical doctors can be channeled into further, genuine healthcare improvements for patients and their families. It is with great pleasure that we present this month’s member in the VASCERN…

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Hiring: IT Helpdesk/End-User Support & Data Manager

The VASCERN coordination team, located in Paris, France, is looking for a full-time IT Helpdesk/End-User Support Specialist and a full-time Data Manager.  Read the full job descriptions (in English and French): Job offer: VASCERN – IT HELP DESK END-USER SUPPORT SPECIALIST (EN-FR)- Sept 2018 Job offer: VASCERN Data manager (EN-FR) – Sept…

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HHT-WG’s Outcome Measures Published in the OJRD!

We are thrilled to announce the publication of European Reference Network for Rare Vascular Diseases (VASCERN) Outcome Measures For the Hereditary Haemorrhagic Telangiectasia (HHT) in the Orphanet Journal of Rare Diseases (OJRD). This Clinical Position Statement is based on the 5 Outcome Measures selected by members of the VASCERN HHT-WG.…

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Opinion on ERN of the Expert Panel in health

On 25 September 2018, the Expert Panel on Effective ways of Investing in Health will organise a Hearing on the application of the ERN model in European cross-border healthcare cooperation outside the rare diseases area (webstreamed). Read the Opinion on 22 Application of the ERN model in European cross border…

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Join the RD-Connect Community

In July 2018 the new RD-Connect Community was launched. This is an international association of individuals and organizations who would like to participate in shaping the rare disease field, promote data sharing and reuse and advance research. Membership is free of charge and open to organisations, research groups and individuals…

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