The 70th Congress of the European Society of Cardiovascular and Endovascular Surgery (ESCVS) was held in Liège, Belgium, from 20 – 23 June 2022. Prof. Julie De BACKER (HTAD-WG Chair), Prof. Guillaume JONDEAU (HTAD-WG Co-Chair), Prof. Bart LOEYS, Dr. Ingrid VAN DE LAAR, Dr. Laura MUIÑO MOSQUERA, and Dr. Meike RYBCZYNSKI were among …
We are pleased to report that an article titled The VASCERN European Reference Network: An Overview, published in the European Journal of Medical Genetics is now open access. It is co-authored by Prof. Guillaume Jondeau (VASCERN Coordinator), Julie Hallac, Marine Hurard, Natasha Barr, Karen Daoud, and Ibrahim Donmez. VASCERN is …
The Neurovascular Diseases Working Group (NEUROVASC-WG) is a new rare disease working group formed in January 2022. The group had its first spring meeting in Paris and online on June 10th, 2022, chaired by Dr. Dominique Hervé (NEUROVASC-WG Chair) and Dr. Anna Bersano (NEUROVASC-WG Co-Chair). Six healthcare professionals, and invited patient organizations …
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 …
A new paper titled Case report study of thalidomide therapy in 18 patients with severe arteriovenous malformations, co-authored by Prof. Laurence Boon (member of the VASCA-WG) and Prof. Miikka Vikkula (Chair of the VASCA-WG), was recently published in the Nature Cardiovascular Research Journal. Arteriovenous malformations (AVMs) are fast-flow lesions that …
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 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 …
