Leuven.IRD pools expertise for research and care improvement for rare diseases

14 february 2025

Even though rare diseases occur in less than one in 2,000 persons, together the more than 6,000 known rare diseases are not that rare. More than half a million Belgians are affected by a rare disease, but the expertise is fragmented. For the first time, the Leuven Institute for Rare Diseases (Leuven.IRD) brings together research expertise in rare diseases at this university and looks for solutions for the challenges they present with an interdisciplinary approach.

Op deze pagina

At KU Leuven, many researchers are working on rare diseases, ranging from searching for the genetic cause and diagnosis to overarching social themes such as access to orphan drugs, patient rights and the psychosocial impact on patients and their environment. By combining research into rare diseases, it becomes clearer where the expertise lies within the organisation and the research gains greater visibility. The interdisciplinary nature and intense collaboration also allow teams to take their research and its funding to a higher level.

Leuven.IRD brings together patient-centred research that goes beyond the medical field. Legal, financial and other barriers prevent patients from having sufficient access to available care. From this patient perspective, the institute aims to be a leading knowledge centre for academic researchers, policymakers, funding agencies, pharmaceutical companies and other stakeholders seeking expertise on rare diseases.

These types of cooperatives are necessary to find solutions to the challenges posed by rare diseases.
Prof. dr. Marion Delcroix

Prof. dr. Marion Delcroix, director of Leuven.IRD: 'There are many experts at KU Leuven and its university hospital who conduct research into rare diseases. This expertise was difficult to find, which meant that common themes for interdisciplinary collaboration remained under the radar. These types of collaborations are necessary to find solutions to the challenges posed by rare diseases.'

Want to find out more? Visit the Leuven.IRD website

Text: KU Leuven

Last edit: 19 december 2025