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#sma
# sma - 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”.
# sma - 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.
# sma - 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.
# 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
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”.
Your say
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Poll: What's the best way to eat spuds?
WITH MANY OF us remaining at home in recent weeks, some of us have been turning our hand to a lot more cooking than we may normally have done.
A chance to be more creative for sure, but also a chance to cook the old reliables and make sure they’re done well.
One thing we all have a preference on is potatoes.
But what is the best way to eat them?
Poll Results:
Mash (3435)
Roast (3366)
Boiled/Steamed (1893)
Chips (1436)
Gratin (779)
Baked (706)
Fried (255)
I don't like spuds (163)
Share your story: voices@thejournal.ie
Opinion: Why labelling your emotions can help you cope with coronavirus anxiety
By Professor Brendan Kelly
Opinion: 'Covid-19 is the world's biggest fear. Welcome to my world.' Diary of a man with Cystic Fibrosis
By Trevor O'Sullivan - @elvisrockysly
Trevor O’Sullivan documents his challenges as a person with CF during the Covid-19 crisis.
A nurse returning to work at the frontline: 'Not all heroes wear capes, but they all need a face mask'
By Deirdre Mullins
Wellness Wednesday: IBS is no joke, but there are simple things you can do to help yourself
By Dr Deirdre G. O'Donovan
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