‘Towards Achieving Equity and Innovation in Newborn Screening across Europe’
As a founding member of Screen4Rare, IPOPI is delighted to share the recent article ‘Towards Achieving Equity and Innovation in Newborn Screening across Europe’ which has been published in International Journal of Neonatal Screening as part of the Special Issue Neonatal Screening in Europe: On the Brink of a New Era.
For some rare disorders, early detection made possible by newborn screening (NBS) can be life changing. NBS as a tool can potentially improve quality of life and prevent long term disability or even premature death. Despite such clear benefits, the availability and conduct of NBS programmes varies greatly across Europe – both between countries as well as regionally.
‘Towards Achieving Equity and Innovation in Newborn Screening across Europe’ presents experiences and best practices from several individual EU countries as well as stakeholder initiatives, and attempts to address such challenges. The paper’s findings can aid in assisting countries which are establishing new or seek to further develop current NBS programmes.
This academic paper emanated from the 2021 event ‘Achieving Equity and Innovation in Newborn Screening and in Familial Hypercholesterolemia Paediatric Screening across Europe’ which was organised by the Slovenian Presidency of the European Union. The key participants of the virtual meeting included medical experts, policy makers and patients’ representatives.
IPOPI is fully committed to continue working with our partners in Screen4Rare for increasing awareness on the importance of good quality NBS and how it can make a difference in the lives of children affected by treatable rare diseases. With the International Neonatal Screening Day (INSD) on 28 June coming up quickly, stay tuned for more information!
The full article is available for further reading here.