September has been designated as Newborn Screening Awareness month in the USA and Canada for several years, and has now been adopted in other countries, including the UK.

Over three million families in the UK are affected by a rare disease. During September we will be raising awareness of the importance of newborn screening with health professionals and the general public. When a rare disease is detected at birth, a child can receive immediate treatment thus preventing neurological impairment, physical disability or death. In the UK we test for five diseases at birth whilst some countries test for many more.

The European Union has made recommendations that all member states should have rare disease plans in place by 2013.  Rare disease planning includes newborn screening.

Save Babies UK activities for September 2010 include:

• Writing to our MPs to remind them of the importance of newborn screening and that the UK is lagging behind the rest of the world.  Any member of the public can help us by similarly writing to their MP.

• National Pathology Week organised by the Royal College of Pathologists is 1-7 November, and the theme for 2010 is 'mother and baby'  We are writing to Directors of Screening Laboratories in the UK asking if they would be prepared to raise awareness of newborn screening in their hospitals as part of that week's activity.

• We are contacting  the press to ask for their help in raising awareness of the benefits of newborn screening.

• We are making a video on newborn screening that can be used at meetings, conferences and other venues to help us get our message across to the public.