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Were here for anyone affected by SMA

Since 1985, we have worked with the SMA Community to ensure that everyone affected by SMA has access to the best care, support and treatments and that research continues to bring much needed breakthroughs.

Our Community Support Team can provide both practical and emotional support.

Contact our Community Support Team >
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Find out more about the work we do

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Our new four year strategy

Our four year strategy aims to build on our strong foundations, experiences and expertise to ensure we deliver the best outcomes for the SMA Community.

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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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Christmas Jumper Day!

Join in with SMA UK’s Christmas Jumper Day on Friday 13th December. Find out more and order your pack.

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SMArt Moves Grant

Our SMArt Moves Grant is open for applications. This grant can assist the SMA Community in purchasing mobility equipment and wheelchairs.

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Update from NICE. Review delayed

NICE has contacted all stakeholders to say that the meeting to discuss the clinical and cost effectiveness of these two drugs will not be this December as planned. It is now likely to be in September 2025.

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FlexiGrants

SMA UK’s FlexiGrants are two grant schemes that help fund travel to hospital appointments and small pieces of equipment

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Fundraising

7/8

Riding a Mile for every Child : Ride Ireland

31/5

Southern Conference League to hold Spinal Muscular Atrophy round this Saturday!

17/1

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

View all Fundraising >
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News

22/10

Share your views to help fix the NHS

17/10

SMA UK visit Biogen’s UK Head Office

26/9

SMArt Moves 2: Helping with Oli’s Powerchair Repairs

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Treatments & Research

5/9

SMA UK lead on collating and submitting comments on the MTA EAG report in collaboration with Treat SMA and MDUK.

30/4

SMA UK at the International Scientific Congress on SMA 2024

4/4

Roche Provides Community Update on Risdiplam Data, including Tablet Formulation

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SMA in numbers

1985

Founded as the Jennifer Trust

262

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

1,256

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