Today marks another landmark moment in the journey towards ensuring every baby born with spinal muscular atrophy (SMA) has the opportunity to receive life-changing treatment before symptoms develop. 

Following confirmation that newborn screening for SMA will begin across 72% of England from October 2026 as part of the NHS England in-service evaluation (ISE), we are delighted to welcome the news that the remaining six newborn screening laboratories will also begin screening from October 2027. This means that, within a year, every newborn baby in England will have access to screening for SMA, regardless of where they are born. 

For future families affected by SMA, this is truly life-changing news. 

A milestone years in the making 

This announcement represents the culmination of many years of collaboration, campaigning and evidence gathering by families, clinicians, researchers and charities. 

For more than a decade, SMA UK has worked alongside partners across the neuromuscular and genetics communities to make the case for newborn screening. We have consistently highlighted the devastating impact of delayed diagnosis while demonstrating the transformational difference that early treatment can make. 

In recent years, our work has included: 

• Working with NHS England, the UK National Screening Committee and clinical experts to share evidence and the lived experiences of families affected by SMA. 

• Supporting research and data collection that has strengthened the case for newborn screening. 

• Partnering with organisations across the rare disease community to advocate for equitable access to early diagnosis. 

• Launching awareness campaigns to improve recognition of SMA and highlight the importance of timely diagnosis. 

• Working closely with policymakers and parliamentarians to ensure the voices of the SMA community remained central throughout the decision-making process. 

Every family who has shared their story, every clinician who has contributed evidence, every supporter who has signed a petition, written to their MP or helped raise awareness and funds has played a part in reaching this milestone. 

Why newborn screening matters 

SMA is a rare genetic neuromuscular condition that causes progressive muscle weakness. Approximately four babies are born with SMA every month in the UK, with around 60% diagnosed with Type 1, the most severe form of the condition. 

Today, three highly effective treatments are available on the NHS. When treatment is given before symptoms appear, babies have the greatest opportunity to develop muscle strength, achieve developmental milestones and live healthier, more independent lives. 

Without newborn screening, diagnosis often comes only after symptoms have developed, by which time irreversible loss of motor neurons has already occurred. 

A simple heel-prick blood test taken shortly after birth can identify babies with SMA before symptoms begin, allowing treatment to start as early as possible. 

Looking ahead 

The phased implementation beginning in October 2026 is an important and pragmatic step, allowing the NHS to introduce screening safely while gathering further evidence through the in-service evaluation. 

Today’s confirmation that the remaining six screening laboratories will join the programme from October 2027 provides reassurance that this will become a truly national service across England. 

Scotland has already introduced newborn screening for SMA in March 2026 and we hope today’s announcement will continue to build momentum across the UK so that every baby, wherever they are born, has the same opportunity for an early diagnosis and access to treatment. 

Giles Lomax, SMA UK CEO said:  

“This is a hugely important step forward. When newborn screening for SMA begins in October 2026, thousands of babies will benefit from earlier diagnosis and access to life-changing treatment. The confirmation that the remaining six screening laboratories will begin screening from October 2027 demonstrates a clear commitment to making newborn screening available across England. 

No family should face a postcode lottery when it comes to a condition where every day without treatment can lead to irreversible loss of motor neurons. We are incredibly grateful to the families, clinicians, researchers, supporters and campaigners who have helped us reach this point, and we look forward to the day when every newborn in England is offered this simple, life-changing test.” 

Andy Fletcher, Chief Executive of Muscular Dystrophy UK said:  

“The decision to introduce newborn screening for SMA across England is a landmark moment for the SMA community and the many partners who have spent years working to make it a reality.  

Newborn screening should never be a postcode lottery. Which is why we’re delighted that, following campaigning and the recent debate in Parliament, the government have committed to ensuring every newborn across the whole of England will be screened for SMA by October 2027.  

This is a huge achievement for our community and everyone who has come together to campaign. We know that with a condition like SMA, time is everything, and this development will be life-changing for future generations of children born with the condition.” 

Secretary of State for Health and Social Care, James Murray, said: 

“No parent should have to watch their child lose the ability to move or breathe, knowing that earlier treatment could have made all the difference. 

“This expansion means babies across England will be tested from birth, giving them the best possible chance of a full and healthy life, and another step in the right direction as we do all we can to reduce health inequalities.” 

“I’m in awe of the campaigners who’ve worked tirelessly to raise awareness of this rare but very serious genetic condition. We’re moving faster and rolling screening out more widely to ensure children get the best treatment from the earliest possible moment.” 

Beyond England 

While today’s announcement is a major step forward for babies born in England, our work does not stop here. 

Every baby deserves the same opportunity to benefit from an early diagnosis, regardless of where they are born. We will continue to work closely with the Welsh Government and the Department of Health in Northern Ireland, alongside clinicians, policymakers and partner organisations, to build the case for newborn screening programmes in Wales and Northern Ireland. 

Families across the UK should have equitable access to this life-changing test, and we remain committed to working collaboratively until newborn screening for SMA is available nationwide. 

Thank you 

This achievement belongs to the entire SMA community. 

To every family who has shared their experiences, every healthcare professional who has championed early diagnosis, every researcher who has generated the evidence, every policymaker who has listened, every partner organisation to has campaigned alongside us and every supporter who has stood alongside us, thank you. 

We are also grateful to Jesy Nelson for helping to shine a spotlight on SMA and the importance of newborn screening. Her willingness to share her family’s experience has helped raise awareness among the wider public and has added an important voice to a campaign that has been driven by the SMA community, clinicians, researchers and supporters over many years. 

Although today is a moment to celebrate, our work is far from over. We will continue to work with governments, healthcare professionals, researchers and the SMA community to ensure every baby across the UK, whether born in England, Scotland, Wales or Northern Ireland, has the opportunity to receive an early diagnosis and timely access to treatment.  

Together, we have come so far, and together we will continue until newborn screening for SMA is available to every family who needs it. 

Read the full statement from the Department of Health and Social Care here