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 …
VASCERN app version 2 was officially launched in August and if you haven’t had a chance to download it yet and try it out, now is the time! In order to start using VASCERN app version 2, please uninstall and delete version 1, if you had this (or any test …
Thanks to the Clinical Patient Management System (CPMS), members of the Vascular Anomalies (VASCA) Working Group have recently been able to discuss two guest patient cases from Portugal and Serbia (countries with no VASCERN Healthcare Provider (HCP) member) and offer valuable advice to the treating physicians in order to help these patients in …
In this edition of VASCERN Spotlights we interview Dr. Andrea Diociaiuti, a dermatologist from Italy and member of the Vascular Anomalies Working Group (VASCA WG). Dr. Diociaiuti shares what attracted him to the specialization of dermatology and vascular anomaly management, the challenges of working in the rare disease field and …
The Pill of Knowledge (PoK) video on Klippel-Trenaunay syndrome (KTS) has just had 6 new language subtitles added! Since its publication in January 2020, VASCERN members of the Vascular Anomalies Working Group (VASCA-WG) have been working on translating the English subtitles and thanks to their help, the subtitles have been …
We are very happy to officially announce the launch of the updated version of our mobile app: VASCERN app version 2! In order to start using VASCERN app version 2, please uninstall and delete version 1 (or any test version) and then: Download the VASCERN App (Version 2) for Android …