Rare Diseases: Health Services
The question
To ask the Secretary of State for Health and Social Care, what steps he is taking to address regional variation in access to rare disease care.
Answered by Ashley Dalton
Working under the UK Rare Diseases Framework, the Government is committed to improving the lives of those living with rare diseases. England’s 2025 Rare Diseases Action Plan was published in February and reports on actions to address health inequalities for people with rare conditions.
Within the National Health Service specialised commissioning portfolio, there are over 80 highly specialised services (HSS) including for rare diseases. Every three to four years, the geographical spread of patients accessing NHS England commissioned highly specialised services is reviewed, most recently in 2024. The analysis looks for variations in the spread of patients accessing the service that may warrant further investigation. Where the analysis found unexpected variation, providers have been asked to develop action plans to address these inequities. Providers who have been successful in reducing variation have also been asked to share this good practice.
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