The European Alliance for Newborn Screening for Spinal Muscular Atrophy, composed of European patient organisations, academics and the pharmaceutical industry, has published the whitepaper, entitled “Spinal muscular atrophy: screen at birth, save lives”. This whitepaper aims to call all European states to introduce routine screening of all newborns for spinal muscular atrophy (SMA) by 2025. This white paper highlights the need of policy decisions on newborn screening for people living with rare diseases, like spinal muscular atrophy, as well as their closest families. In this purpose, the European Alliance for Newborn Screening for Spinal Muscular Atrophy seeks to foster the introduction of universal newborn screening for spinal muscular atrophy in Europe and inform a systematic dialogue within European healthcare systems, including healthcare experts, policymakers and patient advocates.
(source: Orphanews 10 May 2021)