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#Spinraza
# spinraza - Wednesday 8 July, 2020
'I've can't lift my arms, brush my hair, or even go to the toilet alone': Children still waiting on Spinraza drug, Dáil told
The drug is used to treat SMA which can develop in babies and toddlers and can significantly reduce life expectancy.
# spinraza - Tuesday 11 June, 2019
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
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
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.
Your say
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Poll: Should single parent families have two sets of parental leave?
THERE HAS BEEN a mixed reaction to the government’s decision to extend paid parental leave by three weeks due to the Covid-19 pandemic.
The extension applies to both mothers and fathers but there has also been calls this morning for single parent families to benefit.
Social Democrats TD Gary Gannon has said that children in single parent families should also be considered and benefit from the same amount of leave.
Two-parent families can now avail of a combined 10 weeks leave and Gannon says that the children of single-parents should also benefit from the same amount of time with a parent.
Poll: Should single parent families have two sets of parental leave?
Poll Results:
No (5648)
Yes (3938)
Don't know (736)
Share your story: voices@thejournal.ie
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