Save Babies Through Screening Foundation UK, A Resource on Newborn Screening

Patron Jason Manford       

 

Welcome to 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.September is Leukodystrophy Awareness month

 

What is Krabbes Disease?

What is Leukodystrophy?

 

 

 

 

 

 

 

 

 

 

Latest news

 

09/12/2011: Pat Roberts features in The Yorkshire Evening Post [here]

27/11/2011: The Save Babies UK Annual Report for 2010/11 is now available to view [here]

25/11/2011: Our Autumn newsletter is out now! You can download it by clicking [here]

21/08/2011: Please support 12 year old Seth Morris in his fight for Newborn Screening. Click for more...

09/04/2011: The new PANS (Patient Advocates For Newborn Screening) website is now live...  PANS

 

 COMING UP...

 

Rare Disease Day, 29 February 2012

 

 Saving of Lives Through Newborn Screening Celebratory Event,  Westminster 25th April 2012

[more info]

 

Newborn Screening Awareness Week, 2-8 September 2012

 

[previous news stories]

  

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visit the Krabbe's Kids Family Message Board

 

Registered Charity 1133080, Scottish Charity Registration id SC042501

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