News

International Neonatal Screening Day

Today, June 28 2002 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 […]

SMA NBS Alliance wins Company Award for Patient Engagement

We at SMA Europe and on behalf of the entire SMA NBS Alliance are extremely grateful to receive the Black Pearl 2022 Company Award for Patient Engagement. We would like to thank EURORDIS-Rare Diseases Europe and all its nearly 1000 rare disease patient group members for this recognition. SMA Europe also recognizes and expresses its […]

SMA NBS Alliance Webinar on Newborn Screening Techniques for Spinal Muscular Atrophy

The European Alliance for Newborn Screening in SMA organized a webinar for SMA Europe members on 18 January 2022. The topic of newborn screening techniques for SMA was covered from a variety of viewpoints. Speakers included:Marie-Christine Ouillade – SMA Europe, Chair of SMA NBS Alliance Steering Committee Introduction to the SMA Newborn screening process and […]

IBIMA joins the SMA NBS Alliance

The European Alliance for SMA Newborn Screening is proud to welcome its newest partner organization the Biomedical Research Institute of Malaga (IBIMA). IBIMA is a cutting-edge centre of excellence in biomedicine and an accredited research institute in Malaga, Spain. IBIMA includes a multidisciplinary research space in which scientists from the university and health field work […]

Newborn screening for SMA in Poland

SMA NBS in Poland was approved in March 2021 and is now undergoing staggered implementation, province by province, starting in April 2021. The last province is planned to enter the programme in November 2022. The implementation is currently ahead of schedule and as of now, it covers 12 out of 16 provinces which account for […]