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New Information Leaflet for Professionals



SOFT UK has published its updated Information Leaflet for Professionals this week. 

In the past few years there have been some signficant research advances in the Trisomy world.  There have been significant studies into the survival of children with both T13 and T18.  There has also been a lot of new research around surgical intervention, cardiac surgery and ongoing care of babies and children with Trisomy conditions. 

In the UK there have also been big changes within the NHS with the rollout of enhanced antenatal screening for Trisomy 13 and 18.  This means there has been a lot more interest from professionals across the country in finding out more about the conditions. 

SOFT UK felt it was important that our information was updated, to reflect the current picture around Trisomy.  We also felt strongly that we should provide some Lived Experience from our families to professionals, to help them better understand families' needs. 

The new leaflet was co-produced with our Professional Advisers from a range of specialisms including Obstetrics, Paediatrics and Statistics. We also worked with our volunteer and families to provide real-life examples of the importance of seeing the patient as a child first and not a diagnosis. 

The new leaflet will be shared with Professionals through SOFT UK Networks, including directly with NHS professionals at our training events, to hospitals through our partnerships with the Office for Rare Conditions and to other professionals through our third sector partnerships such as Genetic Alliance and Together for Short Lives. 

The leaflet is downloadable in PDF format, but if you would like to order copies for your workplace or a setting you have contact with, please email us on administrator@soft.org.uk

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