Rare disease patient organisations, biobanks, and biomedical innovation KU Leuven
Since the 1990s, a growing number of rare disease patient organisations have set up their own biobanks and registries to serve as resources for laboratory and clinical researchers. As a number of studies have shown, patient organisations’ control of access to these resources enables them to play an active role in promoting, coordinating and directing research into their particular disease, with the professed aim of ensuring that such research ...