Like last year, the Spring Meeting of our Medium-Sized Arteries Working Group (MSA-WG) took place online on June 3rd, 2021! Chaired by Dr. Michael Frank (MSA-WG Chair), it was attended by 7 healthcare professionals and also by European Patient Advocacy Group (ePAG) Co-Chair and Deputy Co-Chair for MSA: Juergen Grunert …
The VASCERN webinar on the topic of “HHT and the lungs“ took place on May 31st, 2021 at 6pm. This collaborative webinar involved clinicians and patient advocates from our Hereditary Haemorrhagic Telangiectasia Working Group (HHT-WG). Claudia Crocione (ePAG Co-Chair for HHT) started with a brief presentation of VASCERN and the …
Originally planned to be a face-to-face meeting, the annual Spring Meeting of the Vascular Anomalies Working Group (VASCA-WG) took place online on May 19th and May 25th, 2021. Chaired by Prof. Miikka Vikkula (VASCA-WG Chair), this meeting was attended by 17 healthcare professionals from 10 EU countries. The patients were …
The first live webinar from our Vascular Anomalies Working Group (VASCA-WG) was held on April 28th, 2021 and focused on the “Classification of vascular anomalies”. This webinar started with a brief presentation of the VASCA-WG by surprise guest, Prof. Miikka VIKKULA (Chair of the VASCA-WG), who equally announced the publication …
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 …
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 …
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 …
The Pediatric and Primary Lymphedema Working Group (PPL WG) face-to-face meeting was scheduled in Helsinki but due to COVID-19, it had to be cancelled and was held online from June 4th to 5th, 2020. This virtual meeting was chaired by Dr. Robert Damstra and attended by 14 healthcare professionals from …
The Vascular Anomalies Working Group (VASCA WG) face-to-face meeting, that was planned to take place in Brussels from April 28th to 29th, 2020 was instead transformed into a 2-day virtual meeting due to COVID-19. Chaired by Professor Miikka Vikkula, the meeting was attended by 14 healthcare professionals from 10 EU …
We have just released a new Pill of Knowledge (PoK) video on our YouTube channel entitled “Role of patient advocates in a European Reference Network, from the patient team of Heritable Thoracic Aortic Diseases (HTAD)“. This Pill of Knowledge features members of the HTAD European Patient Advocacy group (ePAG) explain …
