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>
In the England Rare Diseases Action Plan 2022 NHS England committed to \u2018pilot new approaches for patients with undiagnosed conditions\u2019 (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>"} , "answeringMember" : {"_about" : "http://data.parliament.uk/members/4527", "label" : {"_value" : "Biography information for Helen Whately"} } , "answeringMemberConstituency" : {"_value" : "Faversham and Mid Kent"} , "answeringMemberPrinted" : {"_value" : "Helen Whately"} , "dateOfAnswer" : {"_value" : "2023-05-15", "_datatype" : "dateTime"} , "groupedQuestionUIN" : [{"_value" : "183533"} , {"_value" : "183534"} ], "isMinisterialCorrection" : {"_value" : "false", "_datatype" : "boolean"} , "previousAnswerVersion" : {"_about" : "http://data.parliament.uk/resources/1625258/answer/previousversion/73633", "answeringMember" : {"_about" : "http://data.parliament.uk/members/4527", "label" : {"_value" : "Biography information for Helen Whately"} } , "answeringMemberConstituency" : {"_value" : "Faversham and Mid Kent"} , "answeringMemberPrinted" : {"_value" : "Helen Whately"} } , "questionFirstAnswered" : [{"_value" : "2023-05-15T16:12:18.183Z", "_datatype" : "dateTime"} ]} , "answeringDeptId" : {"_value" : "17"} , "answeringDeptShortName" : {"_value" : "Health and Social Care"} , "answeringDeptSortName" : {"_value" : "Health and Social Care"} , "date" : {"_value" : "2023-05-02", "_datatype" : "dateTime"} , "hansardHeading" : {"_value" : "Hereditary Diseases"} , "houseId" : {"_value" : "1"} , "legislature" : [{"_about" : "http://data.parliament.uk/terms/25259", "prefLabel" : {"_value" : "House of Commons"} } ], "questionText" : "To ask the Secretary of State for Health and Social Care, what steps his Department is taking to support people with undiagnosed genetic conditions.", "registeredInterest" : {"_value" : "false", "_datatype" : "boolean"} , "tablingMember" : {"_about" : "http://data.parliament.uk/members/4618", "label" : {"_value" : "Biography information for Liz Twist"} } , "tablingMemberConstituency" : {"_value" : "Blaydon"} , "tablingMemberPrinted" : [{"_value" : "Liz Twist"} ], "uin" : "183532"} ], "itemsPerPage" : 10, "page" : 0, "startIndex" : 1, "totalResults" : 1, "type" : ["http://purl.org/linked-data/api/vocab#ListEndpoint", "http://purl.org/linked-data/api/vocab#Page"]} }