Frequently Asked Questions

Here are some of our most frequently asked questions with answers provided by our relevant experts. If you cant find what you are looking for or have a further query please get in contact by clicking below and filling out our contact form:

Who funded the RareCare study?

The project was funded by the National Institute for Health and Care Research (NIHR).

Who are the RareCare team?

The RareCare team is a collaboration of organisations working together with the rare disease community.

How was the rare disease community involved?

RareCare built on engagement with the rare disease community by implementing a Patient and Public Involvement, Engagement (PPIE) strategy that ensures a diverse and authentic representation of the 3.5 million individuals living with rare diseases in the UK.

What happens next?

With the project now complete, we're publishing our final outputs and sharing the findings with patients, carers, clinicians, and policymakers. Reports and resources will be posted on this website as they become available, and any follow-on work will be announced here.