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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VASCERN at the 5th annual FAVA-Multi Day!

The 5th Annual FAVA-Multi (The French Network for Rare Vascular Diseases) Day took place on Friday June 7th, 2019 in Paris, France. Professor Guillaume Jondeau, VASCERN and FAVA-Multi coordinator, opened the event in the morning and welcomed the French healthcare professionals and patient advocates in attendance. As members of the French…

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VASCERN Spotlights: Dr Sophie Dupuis-Girod

This month we have the pleasure to interview Dr. Sophie Dupuis-Girod from Lyon, France. Dr Dupuis-Girod is Co-Chair of the Hereditary Haemorrhagic Telangiectasia (HHT) Working Group and talks about how she became interested in this rare vascular disease, her involvement in VASCERN and what she believes are the greatest achievements…

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