SMA Europe and Partners Launch the European Alliance for Newborn Screening

31 August 2020

Early diagnosis and treatment of SMA leads to better outcomes. Launched today, on the last day of SMA Awareness Month, this Alliance brings together all stakeholders (EAMDA, EURORDIS, TREAT-NMD, AveXis, Biogen, and Roche) with the aim, by 2025, for newborn screening programmes in Europe to include a test for SMA. The Alliance is currently writing a Whitepaper gathering evidence for why SMA should be included in national newborn screening programmes in Europe. As a member of SMA Europe, SMA UK will contribute and use the learning and resources developed by the Alliance to continue to work with partners in the UK for these same aims here.

Opening a new horizon for children born with SMA

On 31st August 2020, the last day of SMA Awareness Month, SMA Europe, announced the launch of a new European Alliance for Newborn Screening (NBS) in SMA. 

The Alliance’s main objectives are to decrease the time it takes for a child born with SMA to be diagnosed through NBS and to assist patient advocacy groups in their efforts to accelerate the identification of such children in their countries, given that early diagnosis and treatment of spinal muscular atrophy leads to better outcomes.

In order to advocate for newborn screening for SMA in Europe, SMA Europe founded the Alliance to bring together all stakeholders who share this vision and are willing to work together towards making it a reality.

The founding members of this Alliance include the 19 national SMA patient organisations that are part of SMA Europe – which include SMA UK, EURORDIS - Rare Diseases Europe, the European Alliance of Neuromuscular Disorders Associations, TREAT-NMD and the pharmaceutical companies AveXis, Biogen and Roche.

What will the EU Alliance for NBS for SMA plan to do?

The Alliance demands that by 2025, newborn screening programmes in Europe include a test for spinal muscular atrophy for all newborn children. Though the UK will no longer be part of Europe, stakeholders in the UK are already working on the same aims.

Alliance members will take part in a variety of activities including writing a Whitepaper on Newborn Screening for SMA that collects the scientific evidence supporting why SMA needs to be included in the national newborn screening programmes.

See SMA NBS Alliance website