We are happy to announce that Diana Maas has joined VASCERN as patient advocate of the European Patient Advocate Group (ePAG) for Heritable Thoracic Aortic Diseases (HTAD). Diana lives in the Netherlands and is a board member and representative of Contactgroep Marfan Nederland (The Dutch Marfan Association). She has Marfan syndrome and became …
We are very happy to announce that the proposal “Intranodal Magnetic Resonance Lymphangiography Studies Workshop“, submitted by Vascular Anomalies Working Group (VASCA WG) member Dr. Willemijn Klein (from Radboud University Medical Center Nijmegen), has been selected to receive funding in the first European Joint programme on rare diseases( EJP RD) …
How has the COVID-19 pandemic affected the lives of rare disease patients? The latest Eurordis’ Rare Barometer Voices survey aims to answer this very question by collecting rare disease patients’ experience of COVID-19. “The goal is to voice the specific needs of rare disease patients’ in relation to the COVID-19 …
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 …
