Latest news

Dec 12, 2025

Screen at Birth, Save Lives — 5 Years of the European Alliance for Newborn Screening in Spinal Muscular Atrophy

The recording of our 5th-anniversary webinar is now available!
Relive “Screen at Birth, Save Lives — 5 Years of the European Alliance for Newborn Screening in SMA,” where experts, programme leaders, and families shared key insights and updates from the evolving newborn screening landscape. The recording is available in the resources section. 

Apr 28, 2025

White Paper Update - French Translation

The SMA Newborn Screening Alliance has just launched a French translation of the new version of the White Paper on newborn screening for spinal muscular atrophy. You can find it here.

Mar 7, 2025

SMA Europe at the 8th ERN EURO-NMD Annual Meeting

From 5–7 March 2025, SMA Europe participated in the 8th ERN EURO-NMD Annual Meeting.

Marie-Christine Ouillade Chair of the SMA European Alliance for SMA Newborn Screening (NBSA) and Board Member of SMA Europe, delivered a presentation titled “NBS for SMA Seen by Patients and Carers.” She highlighted the vital role of newborn screening (NBS) in ensuring early diagnosis and intervention for SMA, advocating from both patient and caregiver perspectives.

A huge thanks to the European Reference Network (ERN EURO-NMD) for organizing this impactful symposium and for their dedication to improving care for individuals living with neuromuscular conditions.

Feb 22, 2025

Newborn Screening for SMA in the UK

Servais et. all published a new article highlighting the hurdles in the UK with implementing newborn screening for SMA. The authors recommend to integrate expert opinion and international evidence more thorougly in the decision making process of the UK screening committee (NSC) and the Ministry of Health to scrutinize decisions of idenpendent stakeholders like the NSC. Please find the full article here.