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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

1190617

	registered interest
	date	27/04/2020
	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 recent progress his Department has made on research into the treatment of mitochondrial disease.
	tabling member constituency	The Wrekin
	tabling member printed	Mark Pritchard
	uin	40538
	answer	answer is ministerial correction date of answer 11/05/2020 answer text <p>The Department’s National Institute for Health Research (NIHR) supports three Biomedical Research Centres (BRC) and two Clinical Research Facilities that are carrying out research on mitochondrial disease. This includes a project from the NIHR BRC in Great Ormond Street on novel diagnostic and therapeutic approaches for mitochondrial disorders.</p><p>The NIHR welcomes funding applications for research into any aspect of human health, including mitochondrial disease; it is not usual practice to ring-fence funds for particular topics or conditions. Applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality.</p> answering member constituency Faversham and Mid Kent answering member printed Helen Whately question first answered 11/05/2020 12:03:24 answering member 4527 label Biography information for Helen Whately
	tabling member	1576 label Biography information for Mark Pritchard