Welsh Government to expand newborn screening in Wales: What this means for SMA
23 October 2026
Yesterday, Thursday 22 October, we were in Cardiff alongside the charity SMA UK and families from the SMA community, taking our campaign for newborn screening for spinal muscular atrophy (SMA) to Wales.
We met with the Deputy Minister for Public and Preventative Health, Nerys Evans MS, and her team at the Welsh Government headquarters in Cardiff to discuss the steps needed to ensure all babies in Wales are screened for SMA shortly after birth.
Following our meeting, we’re pleased that this morning the Welsh Government have announced a £1.21m investment for a new laboratory facility at University Hospital Wales to expand newborn screening. This is a positive step as the current testing facilities are not sufficient to be able to introduce more conditions to the newborn screening programme.
This investment means that Wales will be in a position to explore adding SMA to its newborn screening programme in the near future. But it’s also clear that there is still work to be done to make this happen.
Why is this important?
We know that newborn screening is the fastest and most effective route to a diagnosis of SMA, where early treatment before symptoms appear is vital to minimising irreversible damage and helping children grow up without complex needs.
On 1 October, England started screening babies for SMA on a phased rollout. Scotland already began screening earlier this year. And, as we told the Deputy Minister yesterday, Scotland’s first baby was recently diagnosed through the new screening programme, beginning treatment in early September.
“Dani was diagnosed at 13 months old after seven months of delays. We didn’t know it back then, but with SMA, time is everything. Every day without treatment means muscle is lost forever. Newborn screening could have changed that, and every family deserves the same chance. A postcode should never decide a child’s future.”
Charlie, Dani's dad
Until now, there were no plans to screen for SMA in Wales. Investing in new laboratory capacity to be able to expand Wales’s newborn screening programme is a major step forward. We are hopeful that this will lead to a positive outcome for SMA newborn screening so that babies in Wales will receive the same chance of early diagnosis and treatment as those born elsewhere in the UK.
What happens next?
In addition to the £1.21m investment, the Welsh Government have also agreed an additional £529,000 to expand newborn screening to cover testing for the rare metabolic disorder hereditary tyrosinemia Type 1, which was recommended by the UK National Screening Committee back in 2023.
Once this is in place, we’re hoping the Welsh Government will be in a position to look at adding SMA to the newborn screening programme. We agreed yesterday that, together with SMA UK, we will work with officials in Welsh Government to support this work and help make this happen.
“This new lab will modernise and futureproof our newborn screening infrastructure in Wales. We know that screening saves lives, and this development means we’ll be well placed to respond to future screening developments and recommendations. This investment underlines our government’s clear commitment to provide every child in Wales the best start in life.”
Nerys Evans
Deputy Minister for Public and Preventative Health,
A message from our Chief Executive, Andy Fletcher:
We’re grateful to the Deputy Minister and the Welsh Government for inviting us to meet and would like to say a special thank you to the families who joined us to explain the real-life impact of SMA and why we’re campaigning for newborn screening.
While we welcome this news and the Welsh Government’s positive response to futureproofing the newborn screening infrastructure, we still need firm commitment and timelines for introducing SMA to the screening programme.
We will continue working with the Welsh Government, our partners, and the SMA community to end the postcode lottery and ensure that babies in Wales have the same chance of early diagnosis and treatment as those in other parts of the UK.
CEO of SMA UK, Giles Lomax commented: “Today was a big step forward in providing access to an early diagnosis pathway through newborn screening. It also shows the great partnership work between the two charities placing lived experience and the community voice at the heart of decision making. We’re looking forward to working with the Welsh Government to make sure there are no further delays to add SMA to the NBS programme.”
Find out more about our campaigning for newborn screening
