Written questions

Rare Diseases: Health Services

2026-06-08 · Department of Health and Social Care · HL778 · Official question

Question

To ask His Majesty's Government what steps they are taking to ensure the NICE Quality Standard for Rare Disease is implemented; and what data they are currently collecting in line with each statement.

Answer

The Government is committed to improving the lives of those living with rare diseases under the UK Rare Diseases Framework. We published the fifth annual England action plan in February 2026, where we report on the steps we have taken to advance the prior...