In our first VASCERN Exchange Program interview, we are thrilled to interview Dr. Ruben Hermann from the CHU de Lyon HCL, GH Est-Hôpital Femme Mère Enfant in Lyon, France. Dr. Ruben Hermann is a member of the Hereditary Haemorrhagic Telangiectasia Working Group (HHT-WG). In this article, he shares what were…
The webinar on “Composite endpoints including patient relevant endpoints (Quality of Life)” is now available here In this webinar you will learn about: The procedures to combine multiple endpoints and its limitations The properties and the flexibility of the class of generalized pairwise comparison tests The potential advantages and disadvantages…
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…
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…
