The Agrenska centre: a socioeconomic case study of rare diseases.

The Agrenska Centre in Gothenburg, Sweden, provides support services to children with disabilities and their families; these services include a unique programme of family activities, respite services, education, information projects, and research. Participants in their programmes have noted how their experiences at the Agrenska Centre differed from their experiences with the healthcare system in other parts of Sweden. The Department of Economics at the University of Gothenburg conducted a study to evaluate whether the benefits of the Agrenska approach might also extend to healthcare savings. There was, in fact, nearly a three-fold decrease in direct and indirect healthcare costs for families using the Agrenska Centre versus those utilising only routine support services. The implication is that society and governments can ill afford not to seek new ways to organise support networks for patients with rare disorders.