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Last year
2023
Newborn babies to be tested for Spinal Muscular Atrophy from next year
All time
'Timing is key': Parents call for inclusion of rare genetic disease in newborn heel prick test
Spinraza campaigners 'finally have hope' as HSE approves access to drug for rare disease
'We need to do right by families': Call for HSE to fund drug for rare disease after NHS approval
'We are failing these children spectacularly': Row over drug with 'exorbitant' cost rumbles on
'Look in my child's eyes and tell him his life is not worth saving': Parents call for access to medication
'A price has been put on the value of life': HSE will not reimburse drug for children with rare condition
'You wouldn't tell a child they couldn't have chemo, but our son is being denied the medication he needs'
'If she gets another chest infection she probably won't make it, that’s the reality'
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