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

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 Huntingtons disease or cystic fibrosis, will benefit from a new framework to raise awareness of rare diseases, speed up diagnosis and improve care and treatment.The UK Rare Diseases Framework, signed and agreed by all 4 nations of the UK, builds upon the successes of the previous strategy and was developed in consultation with those living with rare diseases following the National Conversation on Rare Diseases.Rare diseases often start through unusual patterns of…

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Press release: New strategy to accelerate diagnosis and improve treatment of rare diseases

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 diseasesMillions of people with rare diseases, like Huntingtons disease or cystic fibrosis, will benefit from a new framework to raise awareness of rare diseases, speed up diagnosis and improve care and treatment.The UK Rare Diseases Framework, signed and agreed by all four nations of the UK, builds upon the successes of the previous strategy and was developed…

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Policy paper: UK Rare Diseases Framework

The UK Rare Diseases Framework lists the priorities and underlying strategic themes that detail how the UK will address the challenges faced by those living with rare diseases.The UK Rare Diseases Framework outlines 4 high-level priorities for rare diseases in the UK over the next 5 years: helping patients get a final diagnosis faster increasing awareness of rare diseases among healthcare professionals better coordination of care improving access to specialist care, treatments and drugsNation-specific action plans will be developed within 2 years of the Framework publication that will detail the steps each administration will take to meet the shared priorities of the Framework.The Department of Health and Social…

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National Congenital Anomaly and Rare Disease Registration Service

The National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) records those people with congenital abnormalities and rare diseases across the whole of England. This registration service: provides a resource for clinicians to support high quality clinical practice supports and empowers patients and their carers, by providing information relevant to their disease or disorder provides epidemiology and monitoring of the frequency, nature, cause and outcomes of these disorders supports all research into congenital anomalies, rare diseases and precision medicine including basic science, cause, prevention, diagnostics, treatment and management informs the planning and commissioning of public health and health and social care provision provides a resource to monitor, evaluate…

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