We are happy to announce that VASCERN’s newest transversal working group (WG), the Pregnancy and Family Planning WG, now has a dedicated page on our website. Access the Pregnancy and Family Planning WG page here The group, coordinated by Professor Julie De Backer (Chair), Professor Guillaume Jondeau (Co-Chair) and Petra…
The Heritable Thoracic Aortic Diseases Working Group (HTAD WG) has been hard at work in order to release six new Pills of Knowledge (PoK) videos, just in time for the holidays! The PoKs are currently available in English and include several that are more directed at patients, and several that…
In December 2020, EURORDIS and the European Patient Advocacy Group (ePAG) patient advocates published a paper, which reviews the progress achieved so far and presents their vision of a mature European Reference Network (ERN) system. “Our vision is for a mature ERN system that leaves no person living with a…
A new Pill of Knowledge video from the Vascular Anomalies Working Group (VASCA WG) is now available! Created by Hevas and validated by the VASCA WG, it covers the topic of PIK3CA gene mutations and how an error in this gene can be the cause of congenital vascular malformations, such…
This month we talk to Christina Grabowski, European Patient Advocacy Group (ePAG) Deputy Co-Chair of the Hereditary Haemorrhagic Telangiectasia (HHT) Working Group (HHT WG), from Germany. Christina represents the German HHT Patient Organisation – Morbus Osler Selbsthilfe e. V and gives us her thoughts on the role of a patient…
November was a busy month for the VASCERN coordination and project management team with the writing and submission of both our Month 18 Activity Report and the CEF Year 3 Proposal! As a reminder, VASCERN signed a 5 year Framework Partnership Agreement (FPA) with the European Commission to receive EU…
We encourage you to sign the new manifesto for a European Health Union in order to strengthen the call to all Members of Parliaments and European leaders for a better EU role in health. A European Health Union will: Strive for the health and wellbeing of all Europeans, with no one left…
Members of the Vascular Anomalies Working Group (VASCA WG) held a virtual consultation using the Clinical Patient Management System (CPMS) to discuss the case of an Italian patient this in November. The panel included healthcare professionals from Italy, The Netherlands, Finland and Spain. In response to the number of complex…
Due to COVID-19, our annual seminar, VASCERN Days 2020, could not be held in Paris as planned. Luckily, we were able to arrange 3 days of online meetings and networking for our members and invited guests, from October 22-24th, 2020, using Webex for the videoconference calls and Whova as event…
The VASCERN Coordination and Project Management team submitted the data for the 18 core ERN indicators required by the European Commission for the first semester of 2020! This monitoring exercise is extremely important in order to demonstrate the value of the ERNs and provide sound data to external stakeholders on…
