European Board of Rare and Undiagnosed Diseases

Presidential Address

It is with great pleasure that I welcome you to the European Board of Rare and Undiagnosed Diseases (EBRUD). The Board was officially established in 2022 by decision of the UEMS Council, following the proposal of the members of the UEMS Multidisciplinary Joint Committee on Rare and Undiagnosed Diseases (MJC RUD), and in full accordance with the UEMS Rules of Procedure (RoP). In this respect, EBRUD follows the most classical and well-recognized model of EU Boards within the UEMS.
EU Boards are widely acknowledged in the UEMS as instruments that ensure standards, quality, and excellence. As the saying goes, “EU Boards are the Education pillars of UEMS bodies.” This guiding principle is at the very heart of our work. Our mission is to strengthen education, professional recognition, and collaboration in the field of rare and undiagnosed diseases, thereby fostering better care for patients and advancing medical knowledge. The primary partner is the MJC RUD, the responsibilities and duties are shared (Terms of reference). Several important documents can be found on the MJC RUD website.
In line with the UEMS RoP recommendations, EBRUD membership was not automatically extended to all MJC RUD members. Instead, a careful nomination process was conducted, and it is permanently open for the new delegates. Furthermore, according to the RoP rules, leading European Scientific Societies were invited to delegate representatives, ensuring broad and balanced expertise. This structure gives the Board both legitimacy and inclusiveness, combining the perspectives of clinicians, researchers, and educators.
Among our priorities, education stands out as the foremost. The EBRUD has taken responsibility for designing and overseeing the EU Board Exam in Essentials in Rare and Undiagnosed Diseases, a landmark initiative that will help harmonize standards and certify expertise across Europe (Description Final). By providing a common framework of knowledge and competence, this exam will support specialists in their lifelong learning while also benefiting healthcare systems and patients (About).
After nearly three years of a dedicated preparatory phase, we are now approaching a truly historic moment: the launch of the very first EBRUD European Examination. We are proud to announce that registration has already opened and that the first candidates have already enrolled. This marks not only the culmination of intensive efforts but also the beginning of a new chapter for rare and undiagnosed diseases within the UEMS.
I would like to thank all colleagues, societies, and institutions who have contributed to this achievement. Together, we are building a strong, sustainable, and forward-looking platform that will promote excellence and recognition in our field for years to come.
Welcome to the European Board of Rare and Undiagnosed Diseases — we are delighted to embark on this journey with you.