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Welcome to SMA UK

Learn about us

Welcome to SMA UK

About SMA UK

At SMA UK, we are committed to supporting everyone affected by SMA so that they have access to the best care, support and treatment and there will be no barriers preventing full inclusion in society.

Watch our short film here.

Newborn Screening for SMA Takes Another Major Step Forward

After years of campaigning, newborn screening for SMA has finally become a reality in England on the 1st October 2026, marking a huge milestone for the SMA community

Read more here >
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Find out more about the work we do

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SMA Care UK

SMA Care UK is a 3 -year project established by clinicians and patient groups to update and implement UK Standards of Care for people of all ages living with SMA.

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Newborn screening for SMA

There is clear evidence that early diagnosis and treatment of SMA leads to better outcomes. Early detection of the condition is critical. Read more about our work in this area here.

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Paws for SMA!

Paws for SMA is a fun virtual challenge to support SMA UK during October alongside your pet. Set a distance target of your choice and then walk, jog or wheel your way to your goal whilst enjoying quality time with your furry friend.

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FlexiGrants

Our FlexiGrants support all those living with SMA. We have two grant schemes which are open to all. Applications may be made to one or both. Decisions are made as quickly as possible.

SPOT SMA PLAIN

SpotSMA

SMA UK’s new symptom awareness campaign! Through SpotSMA, we aim to equip healthcare visitors and community practitioners with the knowledge and confidence to recognise early signs of SMA.

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X8 off road wheelchair for hire!

We are delighted to be able to offer the SMA Community a new X8 off road wheelchair to hire for free. Find out more here.

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Fundraising

16/7

Charity golf days: A great way to have fun and raise funds

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Steven’s Ziplining Challenge

28/5

Giles’ Epic Capital to Capital Cycle

View all Fundraising >
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News

14/10

University of Warwick and King’s College London would like to hear your experiences and views

7/10

Apitegromab’s US approval leaves a UK access gap

1/10

A New Beginning: SMA Newborn Screening Starts in Birmingham

View all News >
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Treatments & Research

7/10

Apitegromab’s US approval leaves a UK access gap

6/10

SMA Care UK at WMS 2026 – Sharing our work and learning from the international SMA community

21/9

NICE Committee Meeting on Intrathecal Onasemnogene Abeparvovec for SMA: October 2026

View all Treatments & Research >

SMA in numbers

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Families and adults living with SMA we’ve supported in 2025

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Families and adults receiving wheelchairs through SMArt Moves Grants in 2025

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Families and adults getting support through FleixGrants in 2025