NUM4Rare: In-Person Kickoff Brings Project Partners Together

On April 16, 2026, the official in-person kickoff for the NUM4Rare project took place at the Berlin Institute of Health (BIH). Following a successful online launch in February, the in-person meeting provided an opportunity to bring the project partners together on-site, refine key objectives, and deepen mutual collaboration.

Representatives from various disciplines and institutions gathered: clinicians, health informatics specialists, representatives from NUM-DIZ, NUM-MB, the local administrative office and the coordination office, patient advocates, as well as other project partners, including experts on rare diseases and other registries. It was precisely this broad composition that highlighted how much NUM4Rare thrives on interdisciplinary exchange and collaboration among various stakeholders.

The event focused on the clinical and technical rationale behind the project, a shared understanding of the overarching goals, and personal exchange among the participants. Through discussions and collaborative group work, key issues were examined from three perspectives: medical, organizational, and technical. The focus was particularly on the expected benefits of NUM4Rare, potential hurdles in implementation, and important prerequisites for the project’s success.

The in-person kick-off thus marks an important milestone for the project’s future progress. In the coming months, the requirements, opportunities, and challenges identified during the discussions will be further refined and translated into the next steps.

Further information on NUM4Rare can be found here: https://tu-dresden.de/med/mf/imb/forschung/forschungsprojekte/num4rare?set_language=en