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…
A new position paper by the Hereditary Haemorrhagic Telangiectasia working group (HHT WG), entitled European Reference Network for Rare Vascular Diseases (VASCERN) position statement on cerebral screening in adults and children with hereditary haemorrhagic telangiectasia (HHT), has recently been published in the Orphanet Journal of Rare Diseases. Abstract: “Hereditary haemorrhagic…
Three new patient pathways have just been released by the Vascular Anomalies Working Group (VASCA-WG) and are now available online! Capillary Malformation Patient Pathway Venous Malformation Patient Pathway Lymphatic Malformation These pathways (along with the already published pathway on Severe/Rare Infantile Hemangioma) were first presented at the International Society for the Study…
