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Specialist paediatric health services for OI were highly valued. The need for more emotional support and improved coordination of adult health services was highlighted. Our findings allow a better understanding of the day-to-day experiences of individuals and families affected with OI. Supporting emotional well-being needs greater attention from policy makers and researchers. Improvements to the coordination of health services for adults with OI are needed and an in-depth exploration of young people's support needs is warranted with resea