34392 - Diseases (Answered)

Mr David Hanson
To ask the Secretary of State for Health, what progress has been made on producing an implementation plan for England for the UK Strategy for Rare Diseases; and when he expects such a plan to be in place.

George Freeman

There are no plans to consult on the implementation plan for England on the UK Strategy for Rare Diseases. NHS England published a Statement of Intent to implement the UK Strategy in February 2014. Implementation of the Strategy is also included in NHS England’s Five Year Forward View.

The UK Rare Disease Forum is responsible for monitoring progress on implementation of the Strategy across the United Kingdom. It published its first progress report on 29 February 2016. This recognises that significant progress has been made against majority of the 51 recommendations in the report. Further reports will be published in 2018 and 2020.