This paper is part of the wider project called CONCORD, which investigated the complex nature of rare conditions, the fact that they affect several body systems and that patients usually have multiple specialist professionals involved in their care. Coordinating care across these multiple providers can be complex, inconvenient, costly and stressful for families.

The aims of this study was to investigate how care services for people with rare diseases are coordinated in the UK, and how patients and health care professionals who treat rare diseases, would like them to be coordinated. This paper helps to expand our understanding about how coordinated care could be optimised according to both the preferences and needs of patients and families affected by rare diseases, and the experiences of health care professionals.