CPMS Latest Update

The Clinical Patient Management System (CPMS) is slowly being implemented in the various VASCERN Rare Disease Working Groups (RDWGs). So far, we have 50 registered users in the CPMS, 38 of which are active, and we have opened 6 panels where patient cases are being discussed between our experts. Several…

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Subtitles being added to our PoK videos!

We are currently adding subtitles to our Pills of Knowledge (PoK) Videos! We hope that by adding subtitles in the various languages of our ERN members, this will allow more people to be able to understand the valuable information in these short videos and therefore reach a wider public across Europe.…

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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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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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