The MJC RUD was establised by unanimous council support at the Warsaw Council meeting in 2015, after proposal of the Section of Clinical Genetics and seven partner sections. At the kickoff meeting in Brussels, 2016, the major goals, the governance structure were difined, and the Bureau was elected. Nowadays we have 47 registered members from 17 sections and UEMS partners.
The major achievements include active partnering with leading rare disease organizations, like EURORDIS, Undiagnosed Network International (UDNI), and European Neuroendocrine Tumor Society (ENETS).
The MJC RUD already developed European Training Requirements (ETR); the EU standard education principles, for rare diseases and rare cancers, which was approved by the UEMS Council in 2020. The ETR for "Rare and Undiagnosed Diseases", which consist of the next files: Training Requirements for the Specialty of Rare and Undiagnosed Diseases (15 pages, number: UEMS 2020/12); Description of “Rare and Undiagnosed Diseases” as a Medical Competency in EU: Aims and objectives for competency training (6 pages, number: UEMS 2020/12); Syllabus for residents and trainees in Rare and Undiagnosed Diseases (13 pages, number: UEMS 2020/12), and rare adult solid cancers: The ETR for the specialty of "Rare Adult Solid Cancers", which consist of the next files: Training Requirements for the Specialty of Rare Adult Solid Cancers (17 pages, number: UEMS 2020/11); Description of “Rare adult solid cancers” as a Medical Competency in EU: Aims and objectives for competency training (10 pages, number: UEMS 2020/11); Syllabus for residents and trainees in Rare Adult Solid Cancers 513 pages, number: UEMS 2020/11; all of these documents are available on the UEMS pages.
Our goals include to extend the partnering inside and outside of the UEMS, to serve the community involved to meet the needs of rare and undiagnosed patients today, we tackle the world’s one greatest challenges by making knowledge accessible at the right time. We plan to launch an informal qualification in rare disease management as a quality mark, with aims to create clinical communities of practice to share knowledge and pathways to improved patient care.
Brussels, January of 2022
Alessandra Renieri Béla Melegh