VASCERN Spotlights: Lise Murphy

VASCERN Spotlights: Lise Murphy “What I have appreciated the most is the welcoming attitude from the physicians and their appreciation for patient advocacy work and what our involvement brings to the European Reference Networks. I have appreciated this attitude a lot. I was also really impressed by the other patient advocates…

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VASCERN App officially launched!

We are happy to announce that VASCERN App, the free mobile application for IOS & Android created by VASCERN, is now officially launched and available for download at both the Play Store and Apple store.   Download the VASCERN App for Android at the Google Store here Download the VASCERN…

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New collaborative HTAD-WG publication

A new collaborative research paper entitled SMAD3 pathogenic variants: risk for thoracic aortic disease and associated complications from the Montalcino Aortic Consortium has just been published in the Journal of Medical Genetics.  It is co-authored by members of the VASCERN Heritable Thoracic Aortic Diseases Working Group (HTAD-WG) including Prof. Julie De Backer (Chair…

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New Video Presenting VASCERN released!

We are very excited to finally share our brand new 5-minute video with you entitled How can VASCERN help you? Link to the video here This video presents VASCERN, its members and the work that our network does to improve the lives of patients with rare vascular diseases. It is…

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Final report from 4th Conference on ERNs available

The full conference report of the 4th conference on European Reference Networks (that took place November 21-22nd, 2018 in Brussels, Belgium) has been released by the European Commission. This comprehensive report outlines the main topics discussed during the 5 round table and 8 parallel sessions that took place during the two day…

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VASCERN Spotlights: Dr. Robert Damstra

VASCERN Spotlights: Dr. Robert Damstra  What is great about the ERNs is that they have given increased recognition to the field of rare diseases. For a very long time it was mainly secondary lymphedema (that is not a rare disease) that had all of the attention and now, thanks to…

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Professor Miikka Vikkula wins First Generet Award!

We would like to congratulate Professor Miikka Vikkula, our Vascular Anomalies Working Group (VASCA-WG) Chair, for being awarded the first Generet Award, with a prize of €500,000 for research into rare diseases! The Generet Fund, managed by the King Baudouin Foundation, aims to support rare disease research by awarding an annual…

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