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.

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.

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.

On behalf of the Ministry of Health, the chairman of the Institute of Child's Health (where the National Newborn Screening is conducted), announced during the Annual Meeting of MDA Hellas for SMA the approval of a National pilot Newborn Screening Program for SMA as well as a pilot screening program for SMA carriers that will be carried out in 2 greek islands, Crete and Ikaria. Currently, preparations are ongoing an the official start is awaited within a few months. 

For further information can be found in the press release of the Greek Ministry of Health (in Greek). Please click here.