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Rare Disease Quality Statements
Why we need your insight
We need a way to drive improvements in care for all rare diseases.
We know that quality standards improve care, because they set out what good looks like, and they can provide ways to measure how individual rare disease services are performing.
Therefore, this project has been launched, to develop a set of quality statements for what good care looks like in rare diseases.
We are asking you to complete this survey, and to tell us how important each statement is to you, or the community you work with.
The survey is open to anyone who has a rare disease, is a family member or carer of someone with a rare disease, charities and health professionals. The survey is to be completed by over 18s – if you are under 18, you must ask a parent or carer to complete the survey on your behalf.
It’s key that we hear from as many people across the rare disease community as possible so that the statements are relevant for the whole community.
For each section, you can also suggest additional statements, if you think there’s something the statements don’t cover, or suggest any changes you think should be made to the wording of the existing statements.
The survey will be open for one month, and will close on the 30th November 2024.
If you would like more information about the survey, please read our participant information sheet, which you can download here.
If you have any technical issues, please contact info@principleconsulting.org.uk
