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All newborns in England to be screened for spinal muscular atrophy from 2027

All newborns in England to be screened for spinal muscular atrophy from 2027

Summary

Starting in October 2027, every baby born in England will be tested for spinal muscular atrophy (SMA), a rare disease that weakens muscles and can be deadly if untreated. Early testing through a simple blood test can help children receive life-saving treatment before symptoms appear.

Key Facts

  • SMA is a rare disease that affects about 1 in 10,000 babies in the UK, causing weak muscles, breathing, and swallowing problems.
  • Without early diagnosis, SMA can cause death within two years of birth.
  • Babies diagnosed with SMA early can get gene therapy that helps them live normal lives.
  • From October 2024, 72% of newborns in England will be tested for SMA through a pilot program.
  • Universal screening for all newborns will start in October 2027 using 13 laboratories, up from the current 7.
  • The test is done by adding SMA screening to the existing heel-prick blood test given to newborns at five days old.
  • The expansion was prompted by concerns about unequal access to testing and pressure from SMA campaigners and public figures.
  • Muscular Dystrophy UK and Spinal Muscular Atrophy UK support the new universal testing plan as a major step for affected families.
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