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Co-ordinated care for people affected by rare diseases: the CONCORD mixed-methods study

Background: A condition is defined as rare if it affects fewer than 1 in 2000 people in the general population. Limited evidence suggests that care is poorly co-ordinated for people affected by rare conditions.

Objectives: To investigate if and how care of people with rare conditions is co-ordinated in the UK, and how people affected by rare conditions would like care to be co-ordinated.

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