News

SMA Newborn Screening: Screen at birth, save lives

There is no more time to waste for babies born with SMA! The European Alliance for SMA Newborn Screening demands Newborn screening programs for SMA in all countries no later than 2025! Learn from a diverse set of people on the importance of SMA newborn screening, let’s work together to make it a reality. We […]

MEPs show their support for newborn screening for World Children’s Day

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. November 20th is an important date as it is the date in 1959 when the UN General Assembly adopted […]

Petition for newborn screening

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. Join the call to the Italian Health Minister to put forward their best practice in newborn screening on the EU agenda and improve the equity of […]

Update on including SMA in newborn screening programmes in Europe

1 Oct. 2021 The European Alliance for Newborn Screening in SMA, led by SMA Europe, is proud to announce that as of 1 September 2021, newborn screening has begun nationwide in Norway for all babies born from that day forward. The link to the official news in the Norwegian language can be found here: https://lovdata.no/dokument/LTI/forskrift/2021-06-11-1874 […]

SMA Newborn Screening in Japan and Brazil

Read the open access, full-text article that was just published in the journal of the International Society for Neonatal Screening: Spinal Muscular Atrophy: Diagnosis, Incidence, and Newborn Screening in Japan “Upon comparing our data to findings previously reported from other countries, the diagnosis of SMA as confirmed by genetic testing was delayed in many Japanese […]

SMA NBS Alliance Welcomes ImmunoIVD as New Member

On 22 June 2021, ImmunoIVD officially joined the European Alliance for Newborn Screening in SMA as a Member Company. View the other Members of the Alliance here. ImmunoIVD is a Swedish company based in Nacka Strand, south of Stockholm, that was founded in 2015 by researchers who wanted to develop a sensitive SCID assay, suitable […]

Update on the Status of SMA newborn screening in Spain

The Spanish patient association for spinal muscular atrophy (SMA) is the Fundación Atrofia Muscular Espinal (FundAME). FundAME is currently following several strategies to support the implementation of SMA newborn screening (NBS). The Alliance and SMA Europe want to support these initiatives and share best practices between SMA patient associations. In the meetings held with the […]

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 […]