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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 will help decision-makers to improve how the National Health Service (NHS) and other services support people living with a rare disease. Our research will generate practical outputs for patients, carers, and service providers.
Cambridge University will also be working alongside RareCare, delivering findings and improvements on health and social care coordination for people living with rare diseases.
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The project will run between May 2024 - June 2026.
Patient and public involvement and engagement:
RareCare will involve patients in every aspect of our work: from concept and methodology development to data collection, from review of outputs to sharing the findings.
We will maximise engagement with people belonging to underserved and underrepresented groups. This work will help us recommend ways for the NHS and other support services to better coordinate care for patients in future.