Patient organizations celebrate the lives of children saved through Newborn Screening and urge the government to screen for more diseases

The UK Patient Advocates for Newborn Screening Group are holding a lunchtime party at the Terrace Pavilion, Palace of Westminster on 25 April 2012 for children with rare diseases, whose lives have been saved through the existing UK Newborn Screening programme.

At the same time, the event is to raise awareness of the many more children in the UK who could be saved if the newborn screening programme was extended to cover even more diseases. In addition to the families, the event will be attended by MPs, members of the Lords, scientists, clinicians and other health professionals from the UK and Europe.

Why is Newborn Screening so important?

Newborn screening enables the early detection of rare diseases at birth and allows for their immediate treatment. Without newborn screening, children with rare diseases such as sickle cell disease, cystic fibrosis and thyroid conditions may suffer physical disability, neurological impairment. or death. Through early detection and treatment, many affected children go on to lead full, normal and healthy lives.

Screening is done by taking a small sample of blood from the baby within a few days of being born. A midwife will perform the ‘heel prick’ test and collect a few drops of blood onto a card which is then sent to the laboratory for analysis. It is a tried and tested method used all over the world.

In the UK, we only screen babies for 5 diseases at birth. In comparison, in other countries screening for many more diseases is routine e.g. Australia (28) New Zealand (28) Austria (29) Spain (27), Iceland (26), Netherlands (20), Portugal (25), USA (between 25 and 60 diseases depending on the State). Although these diseases are said to be rare, there are over 700 separate known inherited metabolic diseases and rare diseases will affect over 3.5 million people in the UK at some point in their lives.

What can we do?

We believe there is so much more can be done to save the lives of children in this country. The aim of the Patient Advocates for Newborn Screening Group is to raise awareness of this and to encourage the Department of Health to go further in its screening programme.

The Patient Advocates for Newborn Screening Group is made up of executives of several UK registered charities representing patients and families affected by rare diseases. We are working to encourage the extension of the newborn screening programme in the UK so that more diseases are detected at birth, early treatment can be offered and more children's lives saved.

The event is at lunchtime, 12.30 pm on the 25th April at the Terrace Pavilion, Palace of Westminster. More information can be found at www.pans-uk.net

Pat Roberts

Chair of the UK Patient Advocates for Newborn Screening Group

Save Babies Through Screening Foundation UK

The UK Patient Advocates for Newborn Screening Group would sincerely like to thank the following companies and organizations who have awarded an Educational Grant to support our

'To Celebrate the Saving of Children's Lives Through Newborn Screening' Event

Terrace Pavilion, Westminster 25th April 2012

Silver Award

BioMarin Europe Limited

Genzyme Therapeutics Ltd

Bronze Award

PerkinElmer Life and Analytical Sciences (UK) Ltd

Sigma-Tau Pharma Limited UK

Swedish Orphan Biovitrum Limited

Vitaflo International Ltd