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International
Society for Neonatal Screening Regional
Meeting, 26-28 April 2009
I was pleased to have the
opportunity of attending the 6th ISNS
European Regional Meeting in Neonatal
Screening, which was held in Prague. It was
a tremendous learning opportunity to be able
to listen to experts from around the world
speaking on how newborn screening programmes
were being extended and implemented.
It was a particular privilege
to meet Dr Rodney Howell who was presenting
on ‘Decision Making on the Newborn
Screening Panel in the United States’.
I had previously met Dr Howell in 2006 at
the Hunters Hope Annual Family Symposium. In
his presentation, Dr Howell commented on the
significant role that patient advocate
organisations, including
Save Babies Through
Screening Foundation in the USA,
had played in lobbying for and achieving the
extension to the newborn screening panel in
the USA. This is extremely encouraging for
us as we move our own work forward in the
UK.
Dr Rodney Howell and Pat
Roberts
I was also thrilled to have
the opportunity to speak with Dr Joe Orsini
on his work on newborn screening for Krabbes
Disease in New York. Also to discuss with
him the situation on Krabbes Disease in the
UK, exploring what we might do here.
There are some wonderful
things happening across Europe in terms of
newborn screening programmes. It was
disappointing therefore to see how the UK
appears to be lagging behind other European
Union countries in terms of their neo natal
screening programme, particularly for some
diseases where there are already tried and
tested protocols for screening and effective
treatments for babies and where other
countries have been testing for many years.
Through our membership of
Rare Disease UK and the ISNS I am certain
that we can make a very positive
contribution to improving this situation.
Pat Roberts
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