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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New Coordination Team Member!

Julia CZILIKA SZAKACS has joined the Coordination team in Paris as our new VASCERN Administrative Assistant. Julia provides administrative support to the VASCERN EU project. Before that, she was an Account Manager in Paris and teacher in Romania. Originally from Transylvania, she speaks Romanian, Hungarian, English, French and Italian. Her educational…

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Aortic Disease Awareness Day

The Aortic Disease (AD) Awareness Day will take place on September 19th, 2018. This annual event aims to raise awareness of aortic diseases by the organisation of events all around the world. The rare diseases covered by the Heritable Thoracic Aortic Diseases Working Group (HTAD-WG) are associated with an increased…

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New VASCERN ePAG Chair !

Following an election process organised by Eurordis this summer, Juergen GRUNERT was appointed as the new Chair of the VASCERN European Patient Advocacy Group (ePAG). Juergen Grunert is already the ePAG Co-Chair for the MSA-WG and is equally Chairman of the Deutsche Ehlers-Danlos-Initiative e.V., the oldest patient organization in Germany.…

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HHT Patient Pathway available in French

The Hereditary Haemorrhagic Telangiectasia (HHT) Patient Pathway is now available in French! Developped by the VASCERN HHT-WG, this document was kindly translated by the The French Network for Rare Multisystemic Vascular Diseases (FAVA-Multi). Patient Pathways aim to improve the care and management of patients with a rare disease. They are…

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Cross-ERN task force on e-histopathology

EpiCare and ERKNet have joined forces to create a cross-ERN e-histopathology task force! This new task force aims to create a digital pathology database in order to tackle rare diseases. ERN partners engaged in the histopathology (and tissue-based molecular-genetic) work-up of rare diseases are encouraged to join! The first web-conference…

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ERN videos now available in all EU languages!

The much loved ERN presentation video clip and the ERN video reportages, produced in 2017, are now finally available in all European languages! The ERN presentation video clip is available in two formats: dubbed version in all EU languages + Norwegian dubbed and subtitled version in all EU languages +…

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