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Dublin: 7 °C Sunday 24 March, 2019

#sma

# sma - Sunday 10 March, 2019

'We are failing these children spectacularly': Row over drug with 'exorbitant' cost rumbles on Spinraza This post contains videos

'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.

# sma - Thursday 28 February, 2019

'Look in my child's eyes and tell him his life is not worth saving': Parents call for access to medication Spinraza This post contains videos

'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.

# sma - Monday 25 February, 2019

'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.

# sma - Sunday 3 February, 2019

'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.

# sma - Saturday 7 January, 2017

'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.

# sma - Friday 28 December, 2012

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”.

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