SMA: Test at birth, Save a life

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. In order to bring about this vision, SMA Europe has established the European Alliance for Newborn Screening for Spinal Muscular Atrophy. The Alliance brings together all the stakeholders who share the above 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 worldwide in their efforts to accelerate the identification of such children, given that early diagnosis and treatment of spinal muscular atrophy leads to significantly better health outcomes. In order to achieve its aim, the Alliance undertakes a variety of activities, including but not limited to producing a White Paper on SMA newborn screening and engaging with health authorities across Europe. These activities develop as the Alliance’s work progresses and are always based on science and aimed at ensuring the best interest of the patient. SMA Europe is a founding member of the Alliance.