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 new article titled The VASCERN-VASCA working group diagnostic and management pathways for severe and/or rare infantile hemangiomas has been published in the VASCERN Special Issue of the European Journal of Medical Genetics. It is co-authored by members of the Vascular Anomalies Working Group (VASCA WG). Infantile hemangiomas (IH) are …
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 …
A new collaborative research paper titled Arrhythmia and impaired myocardial function in heritable thoracic aortic disease: An international retrospective cohort study has been published in VASCERN Special Issue of the European Journal of Medical Genetics. It is co-authored by members and affiliated partners of the VASCERN Heritable Thoracic Aortic Diseases …
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 …
The VASCERN webinar HHT and Nosebleeds took place on on Wednesday 30th March This informative webinar on HHT and nosebleeds was presented by Prof Anette KJELDSEN (HHT Center Odense University Hospital ), Prof Urban GEISTHOFF (Universitätsklinikum Gießen und Marburg), Dr Freya DROEGE (Essen University Hospital ), Dr Ruben HERMANN (CHU de Lyon HCL), …
Drug development programmes in rare diseases have many challenges, some of which differ from those facing researchers working on common diseases, like the lack of clinical research experts and the scarcity of patients. Moreover, academic sponsors and investigators end up getting involved not only in the scientific aspects of the …
VASCERN and the 24 ERNs stand in solidarity with Ukraine and its Rare Disease community. The ERNs have launched a new website (accessible in most EU languages, in Ukrainian and Russian) with contact points for each ERN by speciality as well as their list of members in Ukraine’s Border countries …
The Pediatric and Primary Lymphedema Working Group (PPL-WG) have been busy recently with the creation of two new resources, which are now available on the VASCERN website. The first is a new Dos and Don’ts Factsheet for patients on the topic of Children’s compression, which was initiated by the patient …