Eurordis reports alert over discrimination in critical care guidelines during COVID-19 pandemic and proposes concrete solutions

Eurordis has released a new statement following reports from member organisations and individuals that people living with a rare disease are being discriminated against in critical care guidelines designed to steer emergency/ ICU doctors in the prioritisation of patients during the COVID-19 pandemic. ” EURORDIS anticipates a high aggravation of…

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VASCERN Spotlights: Maria Barea

This month we had the chance to talk to European Patient Advocacy Group (ePAG) Deputy Co-Chair for the Vascular Anomalies Working Group (VASCA WG), Maria Barea. Maria represents the patient organization VASCAPA from Belgium and shares with us the most memorable moments of her VASCERN experience so far, her greatest…

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European Commission launches the “COVID-19 Clinical Management Support System” based on the ERN’s CPMS

Inspired by the Clinical Patient Management System (CPMS), currently used by the European Reference Networks (ERNs) to discuss complex clinical cases, the European Commission launched on March 24th, 2020 the “COVID-19 Clinical Management Support System”. This new simplified system aims to support clinicians in hospitals that are currently facing the…

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Celebrating World Lymphedema Day!

World Lymphedema Day (WLD) took place on March 6th, 2020 and the patient organisations and patient advocates for Pediatric and Primary Lymphedema (PPL) of VASCERN’s European Patient Advocacy Group (ePAG) were in full force raising awareness for lymphedema at this international event! To start, they accomplished something unheard of until now: they managed to connect…

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Rare Disease Day 2020

This year, Rare Disease Day fell on the rarest day of the year, Saturday February 29th, 2020 (a leap year)! In France we were lucky enough to attend an event organised by the 23 French Networks for Rare Diseases (Les filières de santé maladies rares) that took place at Gare…

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New VASCERN Affiliated Partner from Cyprus!

With the bilateral agreement signed we are happy to welcome our newest affiliated partner: The Cyprus Institute of Neurology and Genetics, from Nicosia, Cyprus! This Associated National Center will participate in both the Heritable Thoracic Aortic Diseases Working Group (HTAD WG) and the Medium-Sized Arteries Working Group (MSA WG) and…

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