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 …
To commemorate Rare Disease Day (February 28th), the European Joint Programme on Rare Diseases (EJP RD) is proud to announce the launch of their Instagram account and an exciting social media collaboration with #raredisease influencer Prof. Lara Bloom, President and CEO of the Ehlers-Danlos Society. On Rare Disease Day 2022, Prof. …
The European Joint Programme on Rare Diseases (EJP RD) is proud to announce a collaboration with the Critical Path Institute (C-Path) to advance technologies and methodologies that are fit for regulatory purposes to further global rare disease research and drug development. Building on their experience, both organizations will support the creation of …
The VASCERN webinar Diagnostic and Management Pathway for Lymphatic Malformations took place on on Wednesday December 15th. This informative webinar was presented by Dr. Nader GHAFFARPOUR, Pediatric surgeon from Karolinska University Hospital in Stockholm, Sweden, and included an overview of the various types of lymphatic malformations followed by the presentation of the pathway …
