VASCERN Spotlights: Manuela Lourenço Marques

This month we have the pleasure to interview Manuela Lourenço Marques from Portugal. Manuela is the European Patient Advocacy Group (ePAG) Deputy Co-Chair for the Pediatric and Primary Lymphedema Working Group (PPL WG). She shares her story of becoming a patient advocate, starting a patient association, and what she values…

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ECRD 2020 to take place online on 14-15 May – Register until May 1st, 2020!

Due to the COVID-19 pandemic, the 10th European Conference on Rare Diseases & Orphan Products (ECRD) will now take place ONLINE on the 14th-15th of May, 2020. The ECRD is recognised globally as the largest, patient-led rare disease event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape future rare disease policies.  The theme…

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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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