Call for new HCP members to join existing 24 ERNs

Following the adoption of the Commission Implementing Decision (EU) 2019/1269 of 26 July 2019 amending Decision 2014/287/EU, The European Commission will launch in the coming weeks the first call for new Healthcare Providers (HCP) full members to join the existing 24 ERNs. The concrete date for the opening and closing of the…

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First ERN Newsletter published!

The first ERN newsletter was published on July 3rd, 2019 and sent to the various members of the ERNs by the Directorate General Health and Food Safety. This newsletter, divided into three parts, provides an overview of the activities of the 24 ERNs. The three parts are: 1) Interviews with…

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Bakoumba: Translation of Marfan Children’s book

Bakoumba, a Marfan children’s book, is being translated from French (originally published by the French Marfan Association (MARFANS-Assomarfans) into various EU languages. MARFANS has generously covered the copyright costs for different EU languages for use of the book in print format in Europe and is working on the edition of the…

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Research News: New Heritable Thoracic Aortic Diseases Working Group (HTAD WG) Collaborative Publication

A new collaborative publication entitled Genetic counselling and testing in adults with congenital heart disease: A consensus document of the ESC Working Group of Grown-Up Congenital Heart Disease, the ESC Working Group on Aorta and Peripheral Vascular Disease and the European Society of Human Genetics has just been published in the European Journal of Preventive Cardiology.  It is co-authored by members of the VASCERN Heritable Thoracic Aortic Diseases Working Group (HTAD-WG) including Prof. Julie De Backer (Chair of HTAD-WG) and Prof. Guillaume Jondeau (Co-Chair of HTAD-WG), Prof. Bart…

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New translations of Do’s and Don’ts Factsheets for Marfan Syndrome and Related Disorders (by the Heritable Thoracic Aortic Working Group – HTAD WG) now available!

We are happy to inform you that new translations of VASCERN’s Do’s and Don’ts factsheets for the chapter Marfan Syndrome and Related Disorders (by the HTAD-WG) are now available! As a deliverable of one of VASCERN’s Work Packages (Do’s and Don’ts Factsheets: development of guidelines for optimal care of patients…

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