The Consilium Scientific Team are excited to announce the launch of the RareCare National Survey, a key part of their ongoing work to evaluate and improve rare disease services in England.
This survey aims to gather real-world experiences to help shape future policy on diagnosis, care, treatment, and support for those affected by rare conditions. It is fully anonymous, and should take no longer than 20-30 minutes to complete.
We invite you to participate if you are:
- Living with a rare disease in England
- Caring for someone with a rare disease
- A professional working in the rare disease field
If the above doesn’t describe you, please share this page with colleagues, networks, or individuals you think would be qualified to respond. Your help in reaching the right people is invaluable.
About the project
A rare disease affects about 3.5 million people in the UK at some point in their lives. RareCare (2024-2026) 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.
1 comment
Dorothy ward
So glad somethiNg is been done at last.