Through the last decade access to modern healthcare has improved significantly. The lack of scientific knowledge about rare diseases (RDs) often results in a delay in diagnosis or availability of effective cures for the patients struggling from rare diseases. There is a need to connect international experts, researchers and clinicians to extend rare diseases knowledge and provide effective treatment that improve the prognosis or life comfort of patients.
Biobanks have an infrastructure that ensures sustainability and expansion of the quality management for the preservation, storage, distribution and analysis of human biological samples. The availability of novel information technologies offers the opportunity for data integration, and sharing the information about samples that is a potential for the rare disease area research. Collaboration between Biobanks, scientists and health care professionals can result in measurable benefits to the RD patient community improving knowledge about, for instance, the causes of the disease, the diagnosis and the development of new therapies.