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1625258

	registered interest
	date	02/05/2023
	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	Hereditary Diseases
	house id	1
	legislature	25259 pref label House of Commons
	question text	To ask the Secretary of State for Health and Social Care, what steps his Department is taking to support people with undiagnosed genetic conditions.
	tabling member constituency	Blaydon
	tabling member printed	Liz Twist
	uin	183532
	answer	answer is ministerial correction date of answer 15/05/2023 answer text <p>Several of the actions in the 2022 and 2023 England Rare Diseases Action Plans focus on genomic approaches to provide faster diagnosis for people with undiagnosed rare conditions, including genetic conditions. However, for some people living with extremely rare diseases, the complex and rare nature of their conditions may mean that they never receive a diagnosis. We are committed to ensuring that these people and their families also receive the support and care they need.</p><p>In the England Rare Diseases Action Plan 2022 NHS England committed to ‘pilot new approaches for patients with undiagnosed conditions’ (action 5). To address this commitment, during 2022, NHS England developed a proposal for a syndrome without a name (SWAN) Pilot Programme for people whose conditions remain undiagnosed. It will progress through the NHS England finance and governance processes and there will be a clearer plan for delivery in the next few months. If the SWAN Pilot Programme expands such that there is a need for a service specification, the normal processes would be followed in terms of engaging with stakeholders, including consulting with patients and the public on the delivery of the Programme.</p> answering member constituency Faversham and Mid Kent answering member printed Helen Whately grouped question UIN 183533 183534 question first answered 15/05/2023 16:12:18 answering member 4527 label Biography information for Helen Whately previous answer version 73633 answering member constituency Faversham and Mid Kent answering member printed Helen Whately answering member 4527 label Biography information for Helen Whately
	tabling member	4618 label Biography information for Liz Twist

1642404

	registered interest
	date	06/06/2023
	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	Hereditary Diseases
	house id	2
	legislature	25277 pref label House of Lords
	question text	To ask His Majesty's Government, further to the Written Answer by Earl Howe on 15 July 2013 (HL1303), what progress the Human and Embryology Authority is able to report that may correspond to previous estimates that mitochondria replacement techniques could "save the lives of up to 10 babies who are born every year with a severe form of the disease, such as those with high levels of mutations".
	tabling member printed	Lord Alton of Liverpool
	uin	HL8241
	answer	answer is ministerial correction date of answer 14/06/2023 answer text <p>The Human Fertilisation and Embryology Authority has advised that it has made no assessment of the estimates previously made by the Wellcome Trust Centre for Mitochondrial Research at Newcastle University, as the number of treatments to date in the United Kingdom is so low.</p> answering member printed Lord Markham question first answered 14/06/2023 13:40:46 answering member 4948 label Biography information for Lord Markham
	tabling member	738 label Biography information for Lord Alton of Liverpool