World Children’s Day was first established by the United Nations in 1954 as Universal Children’s Day and is celebrated on 20 November each year to promote international togetherness, awareness among children worldwide, and improving children’s welfare.

Italy has recently introduced the most extensive newborn screening programme in Europe, aligned with EURORDIS’ 11 Key Principles to a harmonised approach to newborn screening published earlier this year.

On Friday 26 March 2021 the Alliance officially launched the Whitepaper to the public with members from the SMA NBS Alliance, SMA Europe member organisations, policymakers, and other stakeholders.

The European Alliance for Newborn Screening in Spinal Muscular Atrophy (led by SMA Europe) demands that by no later than 2025, newborn screening programmes in all European countries include a test for spinal muscular atrophy for all newborn children.

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.