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Dublin: 11 °C Tuesday 22 October, 2019

#Spinraza

# spinraza - Tuesday 11 June, 2019

Spinraza campaigners 'finally have hope' as HSE approves access to drug for rare disease Sma

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”.

# spinraza - Wednesday 15 May, 2019

'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.

# spinraza - 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.

# spinraza - 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.

# spinraza - 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.

# spinraza - 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.

# spinraza - 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.