VASCERN Spotlights: Dr Leema Robert

VASCERN Spotlights: Dr Leema Robert What really interested me about the VASCERN network was that it was not just about the diagnosis but also the management of these patients.   To end Ehlers-Danlos Syndrome (EDS) awareness month on a high note, we have the pleasure to present this month’s member…

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EU Health budget 2021-2027

The EU budget post 2020 (Multiannual Financial Framework 2021-2027) proposal has been adopted by the European Commission. For the European Reference Networks, there will be funding available from the ESF+, Horizon Europe (post Horizon 2020 Programme for Research and Development) and Digital Europe.  Source: factsheet EU Health Budget for the Future…

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Ehlers-Danlos Awareness Month

May was Ehlers-Danlos Awareness Month! Are you now familiar with this group of rare disorders? The VASCERN Medium-Sized Arteries Working Group covers a rare subtype of this group of diseases called vascular Ehlers-Danlos Syndrome (vEDS). The ERN ReCONNET covers the other EDS subtypes. In addition to bruising and skin lucency, vEDS…

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VASCERN Spotlights: Juergen Grunert

VASCERN Spotlights: Juergen Grunert This month it’s Juergen Grunert, the European Patient Advocacy Group (ePAG) Co-Chair for our Medium-Sized Arteries Working Group (MSA-WG), who is in the VASCERN Spotlight! Read about his most memorable moment as an ePAG representative so far and his hopes for VASCERN and for the ERNs…

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Research News: New HTAD-WG Collaborative Publication

A new scientific paper entitled Expert consensus recommendations on the cardiogenetic care for patients with thoracic aortic disease and their first degree relatives has been published! This consensus statement is co-authored by several of our HTAD-WG members including Dr Marlies Kempers (Radboud university medical center), Bart Loeys (University Hospital of Antwerp),…

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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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