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

Patron Jason Manford       

 

Children's Health Conference 2010

 

The Children’s Health Conference 2010 was held at the Queen Elizabeth 2 Conference Centre in London on 23rd November 2010. Professor Lord Robert Winston and Dr Mark Porter jointly chaired the conference, and the opening address was given by Anne Milton MP, Parliamentary Under Secretary of State for Public Health.

 

During the conference, an hour long workshop titled Newborn Screening Expansion Perspectives, facilitated by conference sponsors PerkinElmer, was well attended by delegates.

 

Dr Brad Therrell, of the National Newborn Screening Genetic Research Programme in Austin, Texas, USA, gave a very interesting presentation on the historical background of the extended newborn screening programme in the USA and outlined the step changes and successes that had been achieved over recent years in terms of child health. 

 

Dr Mike Henderson, Consultant Paediatric Biochemist from St James’s University Hospital Leeds spoke on some of the enhanced technical developments in newborn screening laboratories. 

 

Pat Roberts of Save Babies UK spoke on the  current position in terms of newborn screening in the UK, comparing the UK to  other European member states who are extending their newborn screening programmes, and to  other countries with similar health systems to our own.   Pat outlined the importance of extending our newborn screening programme from a patient advocate perspective, including the many issues surrounding newborn screening and work that was being done to address these.  Pat informed delegates of the work that was being undertaken to influence policy making.  She explained the significant work being done by the UK Patient Advocate for Newborn Screening Working Collaborative.

 

December 2010

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]

  

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