United Kingdom Petition to Parliament to Fund SMA Newborn Screening

The petition to fund newborn screening for SMA immediately was created by Dr. Laurent Servais and the deadline to collect signatures is 17 December 2021. If the petition reaches 10,000 signatures, the government will respond. Residents of the UK can sign the petition here. If you do not live in the UK, but know someone […]

Publications on SMA Newborn Screening

While writing the Whitepaper, Spinal muscular atrophy: Screen at birth, save lives, we collected a list of publications on the topic of newborn screening and in some cases, specifically about newborn screening in spinal muscular atrophy. The list below has been extracted from the Whitepaper and will be updated as the Whitepaper is also updated […]

It’s time for Europe to bridge the gap in newborn screening for spinal muscular atrophy

• The European Alliance for Newborn Screening in Spinal Muscular Atrophy calls upon the government of Europe to include a test for spinal muscular atrophy in national newborn screening programmes.• Worldwide newborn screening projects and programmes for SMA clearly demonstrate that early detection and treatment of SMA prevents an early death or a life with […]

Newborn screening opens a new horizon for children born with SMA

SMA NBS Alliance Whitepaper Launch and Roundtable

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 […]

SMA Newborn Screening Pilot to Launch in the Valencia region of Spain

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. This first SMA NBS pilot […]

EURORDIS’ Key Principles for Newborn Screening

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. […]

Global initiatives: Newborn screening for SMA

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. United States Pilot study of population-based newborn screening for spinal muscular atrophy in […]

Newborn screening in Belgium

The Belgian pilot programme for newborn screening in SMA is called Sun May Arise on SMA. You can follow them on Facebook here. Sun May Arise on SMA offers a 3-year neonatal screening programme in Wallonia, Belgium, and is currently in its final year. The Belgian pilot was launched by Prof. Laurent Servais and is […]

SMA: Test at birth, save a life

On 31 August 2020, the last day of SMA Awareness Month, SMA Europe is proud to announce the launch of a new European Alliance for Newborn Screening (NBS) in Spinal Muscular Atrophy (SMA). The Alliance’s main objectives are to decrease the time it takes for a child born with spinal muscular atrophy to be diagnosed […]