World Health Day 2018

World Health Day was held on April 7th, 2018. This yearly event, founded by the World Health Organization, aims to encourage dialogue about the importance of Universal health coverage (UHC) while pointing out the inequalities to healthcare access that currently exist in the world and even across Europe. Vytenis Andriukaitis, the…

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ERNs and eHealth in the Media

Dr. Ana Rath, Director of Orphanet, gave an interview about eHealth and its beneficial use in the European Reference Networks (ERNs) that appeared in the Rare Disease supplement from Mediaplanet UK that was distributed with The Guardian on Rare Disease Day 2018. In this article she talks about how “technology can help the rare disease…

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VASCERN Spotlights: Professor Miikka Vikkula

VASCERN Spotlights: Professor Miikka Vikkula This month we interview the Chair of the Vascular Anomalies Working Group (VASCA WG), Professor Miikka Vikkula, a human geneticist from Brussels, Belgium. Prof Vikkula talks about the challenges of working in the rare disease field and the amazing progress that has been made to…

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Research News: New collaborative HTAD-WG publication

A new scientific publication on arterial tortuosity syndrome has been published online (advance online publication) in Genetics of Medicine. The publication, entitled Arterial tortuosity syndrome: 40 new families and literature review, is co-authored by several VASCERN HCP representatives including Prof Julie De Backer (Chair of the HTAD-WG), Dr Sophie Dupuis-Girod…

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A look back at Rare Disease Day 2018

For Rare Disease Day 2018, the VASCERN coordination team was present at the Rare Disease Village, along with 2 other ERNs, 17 French Rare Disease Networks, 17 patient associations, The Rare Disease Expertise Platform in the South of Paris, and The French Rare Disease Alliance (Alliance Maladies Rares), in Paris…

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