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846084

	registered interest
	date	21/02/2018
	answering body	Department of Health and Social Care
	answering dept id	17
	answering dept short name	Health and Social Care
	answering dept sort name	Health and Social Care
	hansard heading	Rare Diseases
	house id	1
	legislature	25259 pref label House of Commons
	question text	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.
	tabling member constituency	Linlithgow and East Falkirk
	tabling member printed	Martyn Day
	uin	128792
	answer	answer is ministerial correction date of answer 01/03/2018 answer text <p>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.</p><p> </p><p>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.</p><p> </p><p>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.</p> answering member constituency Winchester answering member printed Steve Brine question first answered 01/03/2018 15:08:15 answering member 4067 label Biography information for Steve Brine
	tabling member	4488 label Biography information for Martyn Day

846086

	registered interest
	date	21/02/2018
	answering body	Department of Health and Social Care
	answering dept id	17
	answering dept short name	Health and Social Care
	answering dept sort name	Health and Social Care
	hansard heading	Orphan Drugs
	house id	1
	legislature	25259 pref label House of Commons
	question text	To ask the Secretary of State for Health and Social Care, if he will take steps to ensure that NHS England and NICE revise their appraisal criteria for the NICE Highly Specialised Technologies as a result of the Scottish Medicines Consortium’s review of the definition of orphan and ultra-orphan designation route to include condition prevalence criteria; and if he will ensure that they publish those prevalence criteria.
	tabling member constituency	Linlithgow and East Falkirk
	tabling member printed	Martyn Day
	uin	128793
	answer	answer is ministerial correction date of answer 01/03/2018 answer text <p>The Government and the National Institute for Health and Care Excellence (NICE) have no plans to review the criteria for the selection of topics for referral to NICE’s Highly Specialised Technologies (HST) programme. The topic selection criteria for HST are published at:</p><p> </p><p><a href="https://www.nice.org.uk/about/what-we-do/our-programmes/topic-selection" target="_blank">https://www.nice.org.uk/about/what-we-do/our-programmes/topic-selection</a></p> answering member constituency Winchester answering member printed Steve Brine question first answered 01/03/2018 15:09:31 answering member 4067 label Biography information for Steve Brine
	tabling member	4488 label Biography information for Martyn Day