The NICE Rare Disease Quality Standard is now published on the NICE website.
https://www.nice.org.uk/guidance/qs214
This quality standard covers diagnosing, managing and treating rare diseases in children, young people and adults.
It describes high-quality care in priority areas for improvement.
Claire, a member of our Better Together Community was instrumental in development of these standards. Our thanks go to Claire and the other contributors from Rare Disease support groups.