Save Babies UK

Patron Jason Manford

about us our board information on diseases reports working groups family stories contact us

fundraising volunteering events our sponsors make a donation contact your MP links

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

17/05/2013: Our Spring newsletter is out now! You can download it by clicking [here]

17/05/2013: Please support Nicola Balfour's fundraising efforts in the Prudential Ride London to Surrey 100 on August 4th 2013. Visit her Just Giving page [here]

08/04/2013: Zumbathon Fun Day, June 2nd 2013, The Birdbrook Tavern, Sturmer Road, CO9 4BB. Please join us and help raise money for SBUK. More details [here]

22/03/2013: Please support Team PP in the Great South Run on October 27th 2013, in memory of Miss Phoebe May Knibbs, who lost her life to Krabbes disease on February 23rd 2013. Visit the Just Giving page [here]

23/10/2012: Please support 12 year old Seth Morris in his fight for Newborn Screening. Click for more...

12/10/2012: Pat Roberts has contributed to an article published this month in the Journal of Community Genetics: Screening criteria: the need to deal with new developments and ethical issues in newborn metabolic screening. Alternatively read at the Journal of Community Genetics website here.

06/07/2012: 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. Read more...

30/03/2012: Read more about the Saving of Lives Through Newborn Screening Celebratory Event, Westminster 25th April 2012 [here]

COMING UP...

[previous news stories]

visit us on

Registered Charity 1133080, Scottish Charity Registration id SC042501