After a delay in launching due to the COVID-19 pandemic, the Hospital Universitari i Politècnic La Fe de Valencia will launch a pilot neonatal screening program to detect spinal muscular atrophy (SMA) in all babies born in the Valencian Community, about 40,000 each year, both in public and private hospitals.
EURORDIS, Rare Diseases Europe, recently published the position paper Key Principles for Newborn Screening in January 2021. A multi-stakeholder EURORDIS Working Group on Newborn Screening developed the 11 Key Principles, establishing the scope of Newborn Screening, but also the steps that should be taken at the national and European level to make it a success.
Newborn screening for SMA is not just being implemented in pilot studies and for consideration by national screening committees in Europe. Here is a selection of publications and advocacy efforts from our colleagues around the globe. For European activities, see the Map.
The Belgian pilot programme for newborn screening in SMA is called Sun May Arise on SMA. Sun May Arise on SMA offers a 3-year neonatal screening programme in Wallonia, Belgium, and is currently in its final year.