Rare Diseases

Department of Health and Social Care written question – answered on 15th January 2019.

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Photo of James Frith James Frith Labour, Bury North

To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure the availability of treatments for patients with rare diseases since the introduction of the Orphan Medical Product Regulation 2000.

Photo of Steve Brine Steve Brine The Parliamentary Under-Secretary for Health and Social Care

The Government is committed to improving the lives of all those affected by a rare disease. Implementation plans by NHS England and the Department were published jointly in January 2018 and describe the actions and framework in place to deliver this commitment to improve the lives of those affected by rare disease, as defined in the UK Strategy for Rare Diseases.

Through its technology appraisal and highly specialised technologies programmes, the National Institute for Health and Care Excellence (NICE) plays an important role in ensuring that patients, including patients with rare diseases, are able to benefit from effective new treatments. NICE has recommended a number of drugs for rare diseases through these programmes that are now routinely funded by the National Health Service for eligible patients.

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