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 is funding the RareCare study?

The project is funded by the National Institute for Health care research (NIHR).

Who are the RareCare team?

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

How will the rare disease community be involved?

RareCare will build 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.

How do I get involved?

Further opportunities to be involved in this research will be announced on the RareCare website. These could include delivering research, being a peer researcher, participating in research, being interviewed, taking part in focus groups and doing surveys.