The Pediatric and Primary Lymphedema Working Group (PPL WG) had its annual Spring Meeting on June 8th, 2022, in Brussels and online. Dr. Robert Damstra (PPL-WG Chair) and Prof. Sarah Thomis (PPL-WG Co-Chair) chaired the meeting, which was attended by PPL WG members including Pernille Henriksen, Co-Chair of the European …
From June 6 to 12, the European Union Agency for Cybersecurity (ENISA) ran a Cybersecurity Healthcare Week 2022 awareness campaign. The goal of this campaign was to educate the healthcare community, including healthcare professionals and patients, about phishing attacks and cyber hygiene best practices. Cybercriminals frequently target healthcare professionals and …
Screen4Care, an Innovative Medicines Initiative (IMI 2 JU) project, offers an innovative research approach to accelerate rare disease diagnosis, which is based on two central pillars: genetic newborn screening and digital technologies. People living with rare diseases typically face a long diagnostic process, with an average of eight years of …
The ISSVA World Congress of the International Society for the Study of Vascular Anomalies (ISSVA) took place from the 10-13 May 2022 in Vancouver, British Columbia, Canada. We are happy to report that both the patient advocates as well as healthcare professionals from the Vascular Anomalies Working Group (VASCA WG) were largely represented at this international …
The Hereditary Haemorrhagic Telangiectasia Working Group (HHT WG), chaired by Dr. Sophie Dupuis-Girod (HHT WG Chair), had their Spring meeting in Lyon and online on May 20th, 2022. It was attended by 15 Healthcare professionals, the European Patient Advocacy Group (ePAG) Co-Chair, Claudia Crocione and Deputy Co-chair, Christina Grabowski as …
The Medium-Sized Arteries Working Group (MSA WG) held its Spring Meeting on Thursday, May 5th, 2022, which has been online for the past two years. Dr. Michael Frank (MSA-WG Chair) chaired the meeting, which was attended by 7 healthcare professionals, as well as the European Patient Advocacy Group (ePAG) Co-Chair …
The annual Spring Meeting of the Vascular Anomalies Working Group (VASCA-WG) took place in Brussels on April 6th, 2022. It was chaired by Prof. Miikka Vikkula (VASCA-WG Chair) and Professor Leo Schultze Kool (VASCA-WG Co-Chair), and attended by 17 healthcare professionals, including Caroline van den Bosch, Co-Chair of the European Patient Advocacy …
The Heritable Thoracic Aortic Diseases Working Group (HTAD WG), chaired by Professor Julie De Backer, held their Spring meeting in Paris on April 25th, 2022. The meeting was attended by 30 healthcare professionals as well as the European Patient Advocacy Group (ePAG) Co-Chair, Elena De Moya Rubio, and Deputy Co-Chair, Margit …
A webinar video has just been released on the VASCERN Youtube channel titled Lymphedema and Pregnancy. This video, created by Filière FAVA-Multi (French rare diseases Healthcare Network), is an informative webinar on Pregnancy and Primary Lymphedema presented by Dr. Stéphane VIGNES (Hôpital Cognacq-Jay). The video is in French but the subtitles have been translated …
ERICA Collaborative inter-ERN Research Wall: Research Wall | ERICA (erica-rd.eu) ERICA aims to promote collaborative inter- ERNs research projects. It is therefore crucial to have a centralised location to announce any new project and search for collaborators. A specific web page has been created for this purpose on the ERICA …
