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 Day to take place in June. Thank you to the other Screen4Rare members for their support and we look forward to continuing to work together to advocate for a more harmonised approach to newborn screening in Europe for SMA and other rare diseases.

About Screen4Rare

Screen4Rare is a multi-stakeholder platform launched by the International Patient Organisation for Primary Immunodeficiencies (IPOPI), the International Society for Neonatal Screening (ISNS), and the European Society for Immunodeficiencies (ESID) aiming to exchange knowledge and best practices on newborn screening for rare diseases.

The group’s ultimate objective is, through policy engagement, to work towards ensuring that all babies can have equitable access to newborn screening; a life-saving tool for conditions such as Severe Combined Immunodeficiency (SCID) and SMA.

About the SMA NBS Alliance

The SMA NBS Alliance was founded by SMA Europe in 2020 to reduce the time it takes for newborns in Europe to be diagnosed with SMA. The Alliance seeks to ensure that newborn screening programmes in all European countries diagnose all newborn children with SMA.

The Alliance’s close collaboration of stakeholders – from the patient, academic, pharma/biotech, and testing communities – reinforces the demand of the rare disease community for a harmonised approach to newborn screening in Europe. The achievements of the SMA NBS Alliance include creating much-needed awareness and momentum towards accelerated implementation of newborn screening for SMA in an ever-growing number of European countries.

To date, the SMA NBS Alliance has produced multiple tools to support national organisations to apply for NBS including a policy flyer, conference posters and presentations, videos, and a Whitepaper collecting scientific and technical evidence that is requested by national screening committees. The Alliance also offers webinars for member organisations to educate the different stakeholders about NBS for SMA.