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About the Project
A rare disease affects about 3.5 million people in the UK at some point in their lives.
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RareCare helped decision-makers to improve how the National Health Service (NHS) and other services support people living with a rare disease. Our research generated practical outputs for patients, carers, and service providers.
Cambridge University also worked alongside RareCare, delivering findings and improvements on health and social care coordination for people living with rare diseases.
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The project ran from May 2024 - June 2026.
Patient and public involvement and engagement:
RareCare involved patients in every aspect of our work: from concept and methodology development to data collection, from review of outputs to sharing the findings.
We maximised engagement with people belonging to underserved and underrepresented groups. This work helped us recommend ways for the NHS and other support services to better coordinate care for patients in future.