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

 

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 blood test that is performed after birth. The test is performed 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

 

05/02/2010: Save Babies through Screening Foundation are pleased to announce the formation of the Patient Advocacy for Newborn Screening Group (PANS) in the United Kingdom. Read more...

06/01/2010: Thank you to everyone who joined us at the Sing To Save Babies concert in December. We raised £2500!

 

Coming up

  

February 28th 2010

Rare Diseases Day 2010

 

 

[previous news stories]

  

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Registered Charity 1133080

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