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 …
After almost 2.5 years of operation, we thought it was a good time to give an update on the progress of the Clinical Patient Management System (CPMS) and its implementation in the various VASCERN Rare Disease Working Groups (RDWGs). We currently have 72 users registered in the CPMS and all RDWGs have …
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 …
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 …
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 …
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 …
With the current global spread of the novel coronavirus SARS Cov-2, causing COVID 19, the healthcare professionals of VASCERN’s Rare Disease Working Groups have produced recommendations for the rare vascular disease community. You can find them all here, or by clicking the “VASCERN’s COVID19 recommendations” button on the VASCERN homepage …
The first step of the ERN application revision process (eligibility check by the European Commission) for new Healthcare Provider (HCP) members closed at the end of January. VASCERN is happy to announce that we have now received 27 new applications from 14 countries: 1 Belgium, 4 Germany, 2 Denmark, 2 …
The Do’s and Don’ts Factsheets on Marfan Syndrome and Related Disorders (by the Heritable Thoracic Aortic Diseases Working Group; HTAD WG) have now been translated into Swedish! Take a look here The Marfan syndrome factsheets are therefore now available in Swedish, English, Hungarian, Italian, Dutch and Spanish! As a deliverable …
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 …
