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The UK Rare Diseases Framework Published 9 January 2021 © Crown copyright 2021 This publication is licensed under the terms of the Open Government Licence v3.0 except where otherwise stated. To view this licence, visit nationalarchives.gov.uk/doc/open-government-licence/version/3 or write to the Information Policy Team, The National Archives, Kew, London TW9 4DU, or email: psi@nationalarchives.gov.uk. Where we have identified any third party copyright information you will need to obtain permission from the copyright holders concerned. This publication is available at https://www.gov.uk/government/publications/uk-rare-diseases-framework/the-uk-rare-diseases-framework Ministerial foreword The UK Rare Diseases Framework aims to ensure that the lives of people living with rare diseases continue to improve. We will work across the 4 nations of the United Kingdom to ensure that rare disease patients receive the best possible care, building on the commitments in the UK S

United kingdomNorthern irelandRobin swannMairi gougeonZosia miedzybrodzkaVaughan gethingRare diseases advisory groupGenomics partnershipNational congenitalN genome serviceUnited kingdom national screening committeePrecision medicine scotland innovation centrePublic healthNational genomic test directoryDepartment of healthNational conversation on rare diseases