The latest government guidance for peoplwe with rare diseases.
Statement from the Haemoglobinopathy Co-ordinating Centres/Clinical Reference Group for Haemoglobin Disorders
The UKTS is a member of the Prescription Charges Coalition, an alliance of charities campaigning to abolish prescription charges for all people living with long term medical conditions. Read our letter to the Department of Health and Social Care.
The Hepatitis C Coalition is a group of leading clinicians, patient organisations and other interested parties committed to the reduction of morbidity and mortality resulting from hepatitis C, and the eventual elimination of the virus.
Some 214,000 people in the UK are thought to be living with chronic HCV. Many of these do not know that they have the virus and at present only 4% of those chronically infected receive treatment each year – an unacceptably low number.
Yet with the right diagnosis and treatment, HCV is curable, thanks to new therapies that are now available. Research from the London Joint Working Group on Substance Use & Hepatitis C (LJWG) found it was cheaper to treat chronic hepatitis C virus (CHCV) than to allow the disease to progress, and that treating just 10% of those people with HCV could save £200 million in London alone.
The NHS Sickle Cell and Thalassaemia screening programme is a genetic screening programme (NHSSCTP). This means that it also identifies people who are genetic carriers for sickle cell, thalassaemia and other haemoglobin disorders.
The NHS Sickle Cell and Thalassaemia Screening Programme was set up in 2001. It is the world’s first linked antenatal and newborn screening programme. It covers England and has provided support and policy advice to the rest of the UK and internationally. It offers:
- Antenatal screening to all pregnant women early in pregnancy and, where relevant, to fathers-to-be. The aim is to identify couples at risk of having a child with a condition so that they can make informed choices.
- Newborn screening to all babies. This identifies all babies with sickle cell disease so they can receive prompt and potentially life-saving treatment. It also identifies genetic carriers of sickle cell disease.
UKTS is represented on the Steering Group, the Public Outreach Steering Group, the Newborn Outcomes Information Group and the Laboratory Subgroup of the NHS Sickle Cell and Thalassaemia Screening Programme.
FIND OUT ABOUT:
- SCD & thalassaemia (SCT) screening programme
- NHS Population screening programmes
- Updated SCD and thalassaemia screening
For queries regarding the NHS Sickle Cell & Thalassaemia Antenatal and Newborn Screening Programmes, please contact:
SCREENING HELPDESK ADVISOR
- Helpdesk phone number +44 (0)20 3682 0890