SMA UK welcomed the announcement that newborn screening for spinal muscular atrophy (SMA) in England will begin earlier than expected, with a staggered rollout starting in October 2026. This is significantly earlier than the previously expected timeline of January 2027.

The decision follows years of advocacy by SMA UK, the SMA community, clinicians, and supporters, including awareness raised by Jesy Nelson and affected families. Early diagnosis through newborn screening enables babies to access treatment before symptoms develop, significantly improving long-term outcomes. 

In Bulgaria, newborn screening is currently limited to three rare diseases: phenylketonuria, congenital hypothyroidism, and congenital adrenal hyperplasia. 

The government plans to expand screening to include three additional conditions: spinal muscular atrophy (SMA), cystic fibrosis, and immune deficiencies. The start of the screening for these additional diseases is expected to begin in a few days.

The rollout was delayed by about a year due to funding issues, but has now received over €1.5 million for implementation. 

Screening is done via a heel-prick blood test, analyzed in specialized laboratories. 

The goal is earlier diagnosis and treatment, which can significantly improve health outcomes and quality of life for affected children. 

For further information please click here. 

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.