General News
13 January 2026
Second edition of the Data, Ethics and AI training for rare disease advocates

Two webinar videos have just been released on the VASCERN Youtube channel titled The A-Z of Aortic Syndrome in Marfan syndrome and Before and After Aortic Surgery: Q&A for Marfan Patients.
These videos are recordings of an informative webinar on Aortic surgery in Marfan syndrome (and other HTADs) held on February 24th 2022. It is presented by Prof. Klaus KALLENBACH (Centre Hospitalier de Luxembourg), followed by a Q&A session moderated by Elena DE MOYA RUBIO and Margit ASCHENBRENNER from the European Patient Advocacy Group. The video is in English.
Watch the presentation here and the Q&A session here.
For other videos from our PPL-WG, watch their playlist here