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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 Kingdom , Council Of National Alliances , National Conversation On Rare Diseases , Department Of Health , Social Care , United Kingdom Rare Diseases Framework , Rare Disease United Kingdom , National Conversation , Rare Diseases , United Kingdom Strategy , Rare Disease Day , Disease Day , National Alliances , ஒன்றுபட்டது கிஂக்டம் , சபை ஆஃப் தேசிய கூட்டணிகள் , தேசிய உரையாடல் ஆன் ரேர் நோய்கள் , துறை ஆஃப் ஆரோக்கியம் , சமூக பராமரிப்பு , ஒன்றுபட்டது கிஂக்டம் ரேர் நோய்கள் கட்டமைப்பு , ரேர் நோய் ஒன்றுபட்டது கிஂக்டம் , தேசிய உரையாடல் , ரேர் நோய்கள் , ஒன்றுபட்டது கிஂக்டம் மூலோபாயம் , ரேர் நோய் நாள் , நோய் நாள் , தேசிய கூட்டணிகள் ,

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 ....

United Kingdom , Northern Ireland , Robin Swann , Mairi Gougeon , Zosia Miedzybrodzka , Vaughan Gething , Rare Diseases Advisory Group , Genomics Partnership , National Congenital , N Genome Service , United Kingdom National Screening Committee , Precision Medicine Scotland Innovation Centre , Public Health , National Genomic Test Directory , Department Of Health , National Conversation On Rare Diseases , Genomic Medicine Service , Scotland Laboratory Services Genetics Consortium , Office Of National Statistics , Genomic Laboratory Hubs , Genomics Partnership Wales , University Of Nottingham , Genomes Project Patient Participant Panel , Treatment Fund , National Institute For Health , Public Health England ,

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 Ireland , United Kingdom , Jayne Spink , Matt Hancock , Haseeb Ahmad , Ehlers Danlos , Genetic Alliance United Kingdom , National Conversation On Rare Diseases , Rare Disease Framework , United Kingdom Rare Diseases Framework , National Conversation , Social Care Secretary , Lord Bethell , United Kingdom Rare Disease , Rare Diseases , Baroness Blackwood , British Pharmaceutical Industry , வடக்கு ஐயர்ல்யாஂட் , ஒன்றுபட்டது கிஂக்டம் , ஜெய்ன் ஸ்பிங்க் , மேட் ஹான்காக் , எலர்ஸ் டான்லோஸ் , ஜெநெடிக் கூட்டணி ஒன்றுபட்டது கிஂக்டம் , தேசிய உரையாடல் ஆன் ரேர் நோய்கள் , ரேர் நோய் கட்டமைப்பு , ஒன்றுபட்டது கிஂக்டம் ரேர் நோய்கள் கட்டமைப்பு ,