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Page last updated: 7th October 2024

The 2017 SoC were published in two articles. They replaced the original Standards of Care 2007 which were published as a family-friendly version in 2008:

The articles were written before the new disease-modifying drug treatments became more widely available.  Even then in 2017, recommended standards of care for children, young people and adults varied and were based on:

  • whether they could sit, stand or walk
  • whether their breathing was affected by their SMA
  • what other daily living activities they could manage.
A 3-year project is now underway to update these standards for the UK. Clinicians and patient reps are reviewing all aspects of care and management. You can find out more and keep up to date with recommendations at SMA Care UK > 

You can follow these links to find:

And the individual chapters in the guide:

SMA UK was pleased to have been a very active member of the international group that worked on the project to produce this family guide. We remain grateful to all the people who generously allowed their photos to enrich the UK version.