About Us

Save Babies Through Screening Foundation UK is working in the UK to save and improve the lives of babies, through early detection and treatment of diseases through newborn screening.

We aim to prevent the early death of children resulting from Krabbes disease and other leukodystrophies that are detectable at birth through newborn screening. We aim to promote the advancement of treatments for these diseases whilst providing support for families and children diagnosed with Krabbes disease and other Leukodystrophies.

Newborn screening is more than testing. It is a coordinated and comprehensive system consisting of awareness, education, screening, follow up, diagnosis, treatment and management together with programme evaluation.

Our work involves:

• Working towards securing the extension of Newborn Screening across the United Kingdom. We aim to influence Government to make screening of more diseases available to every child.

• Increasing the awareness of diseases detectable through Newborn screening. It is important that the public, health professionals and the Government are aware of the benefits to children by extending the newborn screening programme.

• Improving the Awareness of the Newborn Screening Test. This includes researching the availability of the screening test in the UK with a view to future provision and a situation where parents do have a choice.

• Promoting consistency in Newborn Screening across England, Wales, Scotland and Northern Ireland. No matter where a baby is born in the UK they should have the same opportunity for a happy, healthy life.

• Examining ways in which Resources for Newborn Screening, testing and follow up Care Programmes can be enhanced, and determining where Save Babies through Screening can assist in this.

• Providing information and support for families caring for children with Krabbe or other leukodystrophies.  We are supporting those Centres of Excellence in the UK providing research facilities and treatment for children with Krabbes disease and other disorders.

We are working collaboratively with other significant organisations in the UK and in Europe who are support children and families with metabolic diseases and leukodystrophies and who similarly advocate the extension of newborn screening.

In particular, we are working closely with The British Trust for the Myelin Project and Climb - Children Living with Inherited Metabolic Diseases.