It is estimated that six out of one hundred Finns have a rare disease, injury, syndrome or malformation. It can sometimes be challenging and time-consuming to identify them. It may be difficult to provide care, rehabilitation and everyday support for people with rare diseases, and there may be large regional variation in services. Therefore, the regional coordination for the prevention, diagnostics, care and rehabilitation of rare diseases has been centralised to five university hospitals in Finland.

Measures described in this programme are still required to improve the inclusion and everyday coping of people with rare diseases, as well as their equity in access to services. The working group also proposes strengthening the national coordination and means for increasing competence and information. Participation of Finnish university hospitals in European reference networks makes expertise available to ever more people with rare diseases. Funding is needed for research on rare diseases. Limited resources for producing and sharing information can be used more effectively by cooperation, in order to provide information about rare diseases in easily understandable form in the native languages of Finland.