News

Newborn screening for SMA in Romania event

The Romanian Association SMACARE in partnership with SMA Europe and the European Alliance for SMA NBS is organizing an event on 25 November in Bucharest, Romania at the Crowne Plaza Hotel Bucharest. The event’s purpose is to discuss newborn screening implementation in Romania at the national level, to understand how NBS is implemented in other […]

Positive developments for SMA newborn screening in Spain and Denmark

On September 15, 2022, the regional government of Galicia, Spain announced they would add three new diseases to the regional screening programme, including SMA, and begin screening for SMA by the end of 2022. Galicia has one of the most comprehensive newborn screening programmes in Spain. There are currently three ongoing pilots for SMA newborn […]

Cost-Effectiveness of Newborn Screening for Spinal Muscular Atrophy in The Netherlands

Read the new article published in August 2022, written in part by SMA NBS Alliance members from the University of Groningen and Novartis Gene Therapies, about the cost-effectiveness of newborn screening for SMA in the Netherlands. The researchers found that NBS for early identification and treatment of SMA versus later symptomatic treatment after clinical diagnosis […]

Launch of the UK SMA NBS Alliance website

UK SMA Newborn Screening Alliance has launched its website and social media channels to update the Community with progress towards newborn screening. Find out more about the Alliance – check out their website and follow them on social media for all the latest updates: Facebook: @UKSMAnewbornscreeningalliance Twitter: @SMA_NBSalliance Instagram: @UKSMA_NBSAlliance Watch the video about the […]

International Neonatal Screening Day

Today, June 28 2022 is International Neonatal Screening Day (INSD) “International Neonatal Screening Day (INSD) is an international initiative launched by the International Society for Neonatal Screening (ISNS), the International Patient Organisation for Primary Immunodeficiencies (IPOPI) and the European Society for Immunodeficiencies (ESID), working in partnership under the multi-stakeholder Screen4Rare platform to promote the importance of […]

Newborn screening pilot studies for SMA starting in France

The AFM-Téléthon, the University Hospitals of Strasbourg, and the Center Hospitalier Universitaire de Bordeaux are launching a pilot project called DEPISMA for neonatal genetic screening for spinal muscular atrophy (SMA) in the Grand-Est and in Nouvelle-Aquitaine regions of France, in collaboration with the regional health agencies. The first babies to be screened for SMA will be […]

SMA Europe joins Screen4Rare

We are proud to announce that SMA Europe has officially joined the Screen4Rare platform as a Partner! After endorsing the Screen4Rare Call to Action – Newborn Screening for Rare Diseases, SMA Europe has become part of the Screen4Rare platform. We plan to take part in the MEP Interest Group and the upcoming International Newborn Screening […]

Newborn screening developments in Serbia and Latvia 2022

The European Alliance for SMA Newborn Screening is proud to share some developments in Serbia and Latvia for SMA newborn screening. Pilot starts in Serbia On 12 April 2022, Serbia started a pilot programme for SMA newborn screening. The project was planned for over a year and has officially started. The pilot study is in […]

A call to introduce newborn screening for spinal muscular atrophy (SMA) in Scotland

Read the new publication from a group of Scottish experts on the need for SMA newborn screening. “However, as professionals involved in SMA research, diagnosis and patient care in Scotland, we believe that all of the necessary data, evidence, and therapeutic approvals are in place to justify the inclusion of SMA on NBS programmes in […]