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MTA appraisal for nusinersen and spinraza

Your input is vital

Both treatments have been funded via time limited Managed Access Agreements (MAA) which come to an end this year. Find out about how SMA UK are invovled, what this means for the SMA Community and how you can have your views heard.

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SMArt Moves Grant

We are delighted to reopen our SMArt Moves Grant for applications. This grant can assist the SMA Community in purchasing mobility equipment and wheelchairs.

NEW WEBINR (A4 (Landscape))

Treatment update

Update from Consultant Paediatric Neurologists Dr Min Ong and Dr Imelda Hughes on the Zolgensma programme in the UK

Ride Scorpion 2024

Ride Scorpion is back!

Join us in 2024 and ride through the beautiful Cotswolds countryside to raise funds for SMA UK!


Resonate under 18’s

We are delighted to be hosting “Resonate” for under 18’s at the Calvert Trust. Lakes and are looking forward to welcoming you for the weekend.

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Marathon in May!

We’re asking our wonderful supporters to cover the distance of a marathon during the month of May, to raise funds to help us to continue to support those affected by SMA.

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Two powered wheelchair users will race up Snowdon to raise £100k… #KnowNoBounds


Family smash target, climbing the Three Peaks in under 24 hours!


Zoe Henderson designs another fantastic Christmas Card for SMA UK!

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New Study Confirms Clinical Effectiveness of Newborn Screening for SMA, and an Update on the SMA / ISE Partnership Board


Roche Provides Community Update on Risdiplam Data, including Tablet Formulation


Office Closure for the Easter Break

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Treatments & Research


Roche Provides Community Update on Risdiplam Data, including Tablet Formulation


Major concerns over the future of adult neuromuscular care in Northern Ireland


Updated guidance on Risdiplam

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SMA in numbers


Founded as the Jennifer Trust


Families and adults living with SMA we’ve supported over the last 12 months


Downloads of our Living with SMA podcast in the last 12 months