Epidermolysis Bullosa (EB) is a rare condition with an estimated 1/17,000 children born with the condition in the United Kingdom. We estimate that there are currently 5,000 people living with the condition.<\/p>
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Due to the way data is collected, the exact number of EB diagnoses is difficult to ascertain. Finished admission episodes (FAE) data for England show that in the financial year of 2013-14, 313 patients received a primary diagnosis of EB. In the following years 244 (2014-15), 360 (2015-16), 346 (2016-167) and 349 (2017-18) patients, respectively, received a primary diagnosis of EB. A FAE is the first period of admitted patient care under one consultant within one healthcare provider. Admissions do not represent the number of patients, as a person may have more than one admission within the period.<\/p>"} , "answeringMember" : {"_about" : "http://data.parliament.uk/members/4067", "label" : {"_value" : "Biography information for Steve Brine"} } , "answeringMemberConstituency" : {"_value" : "Winchester"} , "answeringMemberPrinted" : {"_value" : "Steve Brine"} , "dateOfAnswer" : {"_value" : "2018-12-04", "_datatype" : "dateTime"} , "isMinisterialCorrection" : {"_value" : "false", "_datatype" : "boolean"} , "questionFirstAnswered" : [{"_value" : "2018-12-04T11:25:05.8Z", "_datatype" : "dateTime"} ]} , "answeringDeptId" : {"_value" : "17"} , "answeringDeptShortName" : {"_value" : "Health and Social Care"} , "answeringDeptSortName" : {"_value" : "Health and Social Care"} , "date" : {"_value" : "2018-11-26", "_datatype" : "dateTime"} , "hansardHeading" : {"_value" : "Epidermolysis Bullosa"} , "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 estimate he has made of the number of people with Epidermolysis Bullosa in the UK.", "registeredInterest" : {"_value" : "false", "_datatype" : "boolean"} , "tablingMember" : {"_about" : "http://data.parliament.uk/members/4131", "label" : {"_value" : "Biography information for Jim Shannon"} } , "tablingMemberConstituency" : {"_value" : "Strangford"} , "tablingMemberPrinted" : [{"_value" : "Jim Shannon"} ], "uin" : "195591"} ], "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"]} }