A shared vision
SMA Newborn Screening Alliance
The European Alliance for Newborn Screening in Spinal Muscular Atrophy demands that by 2025, newborn screening programmes in all European countries include a test for spinal muscular atrophy for all newborn children.
SMA Europe has established the European Alliance for SMA Newborn Screening to bring together all stakeholders who share this vision and are willing to work together towards making it a reality.
The overarching objective of this cooperation is to decrease the time it takes for a child born with spinal muscular atrophy to be diagnosed, and to assist patient advocacy groups in their efforts to accelerate the identification of such children, given that early diagnosis and treatment of spinal muscular atrophy leads to better outcomes.
NBS Alliance Website: SMA Newborn Screening Alliance – SMA: Test at birth, save a life
Why should newborn screening be implemented?
Newborn screening (NBS) involves the use of existing methods that can detect spinal muscular atrophy when the child is a few days or weeks old. It is important to diagnose SMA and begin treatment, including proactive supportive care, as early as possible to halt irreversible motor neuron loss and disease progression
Multi-stakeholder workshop on newborn screening
The aim of the ENMC Workshop on NBS was to gather the available information on NBS technical, ethical, economical and practical aspects, and to identify the gap in current knowledge of patients identification and communication of diagnosis and treatment following NBS.
This workshop took place in May 2019.