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1625258
registered interest false more like this
date less than 2023-05-02more like thismore than 2023-05-02
answering body
Department of Health and Social Care more like this
answering dept id 17 more like this
answering dept short name Health and Social Care more like this
answering dept sort name Health and Social Care more like this
hansard heading Hereditary Diseases remove filter
house id 1 more like this
legislature
25259
pref label House of Commons more like this
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. more like this
tabling member constituency Blaydon more like this
tabling member printed
Liz Twist more like this
uin 183532 more like this
answer
answer
is ministerial correction false more like this
date of answer less than 2023-05-15more like thismore than 2023-05-15
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 more like this
answering member printed Helen Whately more like this
grouped question UIN
183533 more like this
183534 more like this
question first answered
less than 2023-05-15T16:12:18.183Zmore like thismore than 2023-05-15T16:12:18.183Z
answering member
4527
label Biography information for Helen Whately more like this
previous answer version
73633
answering member constituency Faversham and Mid Kent remove filter
answering member printed Helen Whately more like this
answering member
4527
label Biography information for Helen Whately more like this
tabling member
4618
label Biography information for Liz Twist more like this