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UK introduces Rare Diseases Framework to improve the lives of people with rare diseases

UK introduces Rare Diseases Framework to improve the lives of people with rare diseases bluebird bio releases a video to raise awareness – Rare Disease Day 2021 is on 28 February Earlier this year, the Department of Health and Social Care (DHSC) published the UK Rare Diseases Framework to promote positive change in the way people with rare diseases are diagnosed, care for and treated. According to Rare Disease UK, one in 17 people will be affected by a rare disease at some point during their lifetime, with 3.5 million people in the UK and 30 million people across Europe living with a rare disease. It can often take a long time for people living with a rare disease to get a diagnosis – on average, it takes over five years to receive an accurate diagnosis.

United kingdomCouncil of national alliancesNational conversation on rare diseasesDepartment of healthSocial careUnited kingdom rare diseases frameworkRare disease united kingdomNational conversationRare diseasesUnited kingdom strategyRare disease dayDisease dayNational alliancesஒன்றுபட்டது கிஂக்டம்சபை ஆஃப் தேசிய கூட்டணிகள்தேசிய உரையாடல் ஆன் ரேர் நோய்கள்

The UK Rare Diseases Framework

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

MIL-OSI United Kingdom: New strategy to accelerate diagnosis and improve treatment of rare diseases

MIL-OSI United Kingdom: New strategy to accelerate diagnosis and improve treatment of rare diseases
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Northern irelandUnited kingdomJayne spinkMatt hancockHaseeb ahmadEhlers danlosGenetic alliance united kingdomNational conversation on rare diseasesRare disease frameworkUnited kingdom rare diseases frameworkNational conversationSocial care secretaryLord bethellUnited kingdom rare diseaseRare diseasesBaroness blackwood

New strategy to accelerate diagnosis and improve the treatment of rare diseases

New strategy to accelerate diagnosis and improve the treatment of rare diseases
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United kingdomNorthern irelandJayne spinkMatt hancockHaseeb ahmadEhlers danlosGenetic alliance united kingdomNational conversation on rare diseasesUnited kingdom rare diseases frameworkNational conversationSocial care secretaryLord bethellUnited kingdom rare diseaseRare diseasesBaroness blackwoodBritish pharmaceutical industry

New strategy to accelerate diagnosis and improve treatment of rare diseases

New strategy to accelerate diagnosis and improve treatment of rare diseases The new framework will raise awareness of rare diseases, speed up diagnosis and improve care and treatment. From: 9 January 2021 Rare Disease Framework sets out vision to improve the lives of more than 3.5 million people with rare diseases in the UK The framework will speed up diagnosis, increase awareness and improve treatment and care The new strategy has been designed around the views and experiences of those living with rare diseases Millions of people with rare diseases, like Huntington’s disease or cystic fibrosis, will benefit from a new framework to raise awareness of rare diseases, speed up diagnosis and improve care and treatment.

Northern irelandUnited kingdomJayne spinkMatt hancockHaseeb ahmadEhlers danlosGenetic alliance united kingdomNational conversation on rare diseasesRare disease frameworkUnited kingdom rare diseases frameworkNational conversationSocial care secretaryLord bethellUnited kingdom rare diseaseRare diseasesBaroness blackwood