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Sunday 24 September 2023 Dublin: 18°C

# sma

Last year
'Timing is key': Parents call for inclusion of rare genetic disease in newborn heel prick test
SMA is a degenerative disease that causes damage to nerves that develop muscle function and allow children to eat, move and breathe.
All time
Spinraza campaigners 'finally have hope' as HSE approves access to drug for rare disease
The drug has been approved for children with SMA Type I, II or III on “an exceptional and individualised basis”.
'We need to do right by families': Call for HSE to fund drug for rare disease after NHS approval
Spinal muscular atrophy weakens muscles and causes problems with movement, breathing and swallowing.
'We are failing these children spectacularly': Row over drug with 'exorbitant' cost rumbles on
Negotiations, and clashes, over the price of Spinraza are ongoing behind the scenes.
'Look in my child's eyes and tell him his life is not worth saving': Parents call for access to medication
About 26 children with SMA, a rare muscle-wasting condition, could benefit from Spinraza.
'A price has been put on the value of life': HSE will not reimburse drug for children with rare condition
The HSE said the current price of Spinraza – more than €20 million over five years – is not cost-effective.
'You wouldn't tell a child they couldn't have chemo, but our son is being denied the medication he needs'
Parents of children with a rare genetic condition are fighting for access to a potentially life-changing drug.
'If she gets another chest infection she probably won't make it, that’s the reality'
Nellie and Lara are the only two children in Ireland with Spinal Muscular Atrophy Type 1 – an extremely rare genetic condition.
Small and medium businesses could* deliver 20,000 jobs
The Small Firms Association makes optimistic prediction for 2013 – *but only if SMEs are “placed at the heart of economic policy”.