Rare Diseases

(asked on 21st February 2018) - View Source

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, with reference to his Department's policy paper, UK strategy for rare diseases: implementation plan for England, published on 29 January 2018, what steps he is taking to increase cross-border collaboration (a) within the UK and (b) between the UK and the EU in developing approaches to treatment and management of rare diseases.


Answered by
Steve Brine Portrait
Steve Brine
This question was answered on 1st March 2018

The activities described in the Department’s ‘UK Strategy for Rare Diseases: implementation plan for England’ are those that are shared between the Department and a number of partner organisations in implementing the UK Strategy for Rare Diseases. This implementation plan applies to England only.

The UK Rare Disease Policy Board, which has representation of all four United Kingdom nations, oversees the implementation of the UK Strategy for Rare Diseases across the UK. The UK Rare Disease Policy Board publishes on a biennial basis an update on the implementation activities across the whole of the UK. The next report was published on 28 February 2018 and will highlight, in greater detail, initiatives and achievements across the four nations over the past two years, as well as look at UK-wide developments and challenges in the rare diseases landscape that will be important in the forward look to 2020.

The UK is involved in European Reference Networks, virtual centres of knowledge, skills and expertise in the field of rare diseases and complex conditions, which provide a platform to create partnerships between healthcare providers. The UK participates in 23 out of the 24 networks (involving 113 separate UK groups) and leads six networks.

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