|
'To Celebrate the Saving of Children's Lives Through Newborn Screening' Event
Terrace Pavilion, Westminster 25th April 2012
Click here to learn
more...
++ NEWSFLASH ++ APRIL 8TH 2012
++ NEWSFLASH ++
Save Babies UK welcomes the DoH
announcement to introduce a Pilot for screening newborns
for a further five disorders from July 2012. However this is too little and too late. The pilot will only cover 60% of babies born in the UK from July 2012. Almost as many children with diseases that could have been diagnosed and treated will go undetected, as those that the DoH
say will be saved. The children who will go undetected
will be subjected to lifetime disability or even death.
40% of newborn babies will not be screened. The DoH are estimating 35 children will be saved in 12 months by early detection of their disease. Although past experience shows that this may be an underestimate, nevertheless on DoH estimates, 20+ children with these diseases will go undetected and may be subjected to a lifetime of severe disability or death. No decision has been taken by the DOH on what happens after the 12 month Pilot period. Are the DoH going to cancel the programme ensuring that more babies have a life of disability or even die? Many other countries, including some EU countries have screened for these diseases for many years.
Save Babies UK continues to ask the question, why is the UK always lagging behind the rest of the world in terms of saving the lives of children?
Save Babies UK
Working in the United Kingdom to save and improve the lives of babies through early detection and treatment of Leukodystrophies and other genetic diseases through newborn screening.
Save Babies Through Screening Foundation
UK is a non-profit making charitable organization run by volunteers. Our mission is to improve and save the lives of children by working to prevent disabilities or early death resulting from diseases that are both detectable through newborn screening and treatable.
We are working to advance the health and
wellbeing of children suffering from Krabbes Disease and
other Leukodystrophies in the UK that are detectable at
birth. We aim to promote the advancement of research
and treatments for Krabbes Disease and other Leukodystrophies. We offer support for families and
children diagnosed with Krabbe Leukodystrophy.
Screening for all of the diseases we are advocating is not available in the UK today, however it is routine in some other countries. Without newborn screening, children with disease or disorders may suffer neurological impairment, physical disability or death. Many affected children can lead normal healthy lives if a disease is detected at the earliest opportunity and a course of treatment is started immediately.
Newborn Screening is a simple test that is performed after birth, by pricking the babies’ heel for a small sample of blood and then sending it to a laboratory for testing.
What is Krabbes Disease?
What is Leukodystrophy?
|
