Chronic Illnesses

(asked on 13th April 2017) - View Source

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health, what assessment he has made of the effectiveness of the implementation of the UK Strategy for Rare Disease; and if he will make a statement.


This question was answered on 24th April 2017

The Government is committed to the implementation of the United Kingdom Strategy for Rare Diseases that sets out a long-term strategic vision for improving the lives of people with rare diseases and conditions.

The coordinated implementation of the UK Strategy for Rare Diseases across the four nations of the UK is driven by the UK Rare Diseases Policy Board. The Policy Board is a UK-wide body that supports the development of policies and strategies concerning research and development of new therapies and technologies for the treatment of rare diseases and their potential for patient benefit.

The Policy Board also considers how delivery of the UK Strategy for Rare Diseases can be enhanced and improved through the outputs of initiatives from across the broader genomics and rare diseases landscape.

NHS England has recently announced an intention to publish an implementation plan setting out its delivery contribution to the UK Strategy for Rare Diseases in 2017/18 as part of the plans for the next steps of the Five Year Forward View.

A progress report on the implementation of the UK Strategy for Rare Diseases was published early in 2016 and a further update will be published in early 2018.

Reticulating Splines