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NEWS and UPDATES

Is SMA newborn screening available where you live?
November 4, 2026
We know that newborn screening is the fastest and most effective route to a diagnosis of spinal muscular atrophy (SMA), allowing life-changing treatments to begin before symptoms appear. Some babies are already being screened shortly after birth, but currently there is a postcode lottery in the UK. We need to change that.
Read Is SMA newborn screening available where you live?
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Is SMA newborn screening available where you live?
November 4, 2026
Read Is SMA newborn screening available where you live?
Update on the GRAND CANYON trial of sevasemten for Becker muscular dystrophy
November 4, 2026
Read Update on the GRAND CANYON trial of sevasemten for Becker muscular dystrophy
SMA newborn screening: Northern Ireland update
November 3, 2026
Read SMA newborn screening: Northern Ireland update
Response to the Autumn Budget
October 29, 2026
Read Response to the Autumn Budget
‘Checking your chest if you’re disabled’: new health information in collaboration with CoppaFeel!
October 27, 2026
Read ‘Checking your chest if you’re disabled’: new health information in collaboration with CoppaFeel!
Driving Independence: What the Motability Scheme means to our community
October 27, 2026
Read Driving Independence: What the Motability Scheme means to our community
One year on since the launch of our new strategy
October 26, 2026
Read One year on since the launch of our new strategy
Welsh Government to expand newborn screening in Wales: What this means for SMA
October 23, 2026
Read Welsh Government to expand newborn screening in Wales: What this means for SMA
Calling for urgent action to fix NHS continuing healthcare funding
October 20, 2026
Read Calling for urgent action to fix NHS continuing healthcare funding
The Microscope Ball 2026 raises record amount
October 9, 2026
Read The Microscope Ball 2026 raises record amount
Call for MLAs to support newborn screening for SMA in Northern Ireland
October 9, 2026
Read Call for MLAs to support newborn screening for SMA in Northern Ireland
Orange background with white text that reads 'Treatment update'
Apitegromab, a treatment for SMA, will not be submitted for approval in the UK
October 7, 2026
Read Apitegromab, a treatment for SMA, will not be submitted for approval in the UK

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