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…
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 month. The panel included healthcare professionals from Italy, The Netherlands, Finland and Spain. In response to the number of complex cases…
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…
A new video, highlighting the importance of FAIR registries, appeared in the October newsletter of the International Society for the Study of Vascular Anomalies (ISSVA). It is a great video to share with anyone interested in rare disease research and data sharing. The video gives a clear and helpful explanation…
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…
The VASCERN Registries Project launched on May 1st, 2020 after our proposal was selected to receive funding from the Health Programme of the European Union under the call for proposals HP-PJ-2019 on Rare Disease registries for the European Reference Networks. The Grant Agreement was finalised in April and the project…
This month, members of the Vascular Anomalies Working Group (VASCA WG) held a virtual meeting using the Clinical Patient Management System (CPMS) in order to discuss two new patients cases. They used the CPMS’s videoconferencing tool in order to schedule a dedicated meeting where two Dutch patients were discussed. The…
The first International E3 Summit, powered by The Marfan Foundation and VASCERN has come to an end! This historic event took place from Aug 25 – Sep 12th, 2020 and gathered more than 2,810 registrants from 75 countries for three weeks of education, empowerment and enrichment. Live educational presentations during…
Ibrahim Donmez, our IT Helpdesk & End User Support Specialist, has made 5 new training videos regarding the use of the Clinical Patient Management System (CPMS) and they are now available to view! These short videos aim to assist our users to master some of the key steps involved in enrolling…
