Parents with children who have a muscle-wasting disease are calling for a drug that can help maintain independence to be offered by the NHS in England.
Families calling for Spinraza to be approved to treat people with spinal muscular atrophy (SMA) are set to protest at a meeting later.
NICE previously refused to recommend it because of uncertainties over its long-term effectiveness and high cost.
Parents say the drug could be life-changing for those with the disease.
SMA is a genetic condition that makes muscles weaker and causes problems with movement.
Katie Prescott’s daughter Heidi, 11, has had the condition since birth, but was not