My News
Personalise your news feed by choosing your favourite topics of interest
#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.
Spotlight
The 33rd Dáil
Week One: Ructions over the geographical spread of ministries and party in-fighting.
# 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
View more polls
Poll: Will you be attending a pub or restaurant this weekend?
THIS IS THE first weekend since pubs and restaurants reopened for businesses on Monday.
There are strict guidelines in place for the businesses due to Covid-19 restrictions, with a time limits in place for patrons and a requirement to buy a meal if people are consuming alcohol.
TheJournal.ie visited some pubs earlier in the week to see what the ‘new normal’ is like, but will you?
Today’s poll: Will you be attending a pub or restaurant this weekend?
Poll Results:
I won't be going to either (10548)
Yes, I'll be heading to a restaurant (1937)
Yes, I'll be heading to a pub (1459)
I've no bookings made but I might (1054)
I hope to go to both (566)
I've made several bookings (144)
Share your story: voices@thejournal.ie
Opinion: Our rotting Seanad won’t survive much longer, it's crying out for reform
By Adam Hallissey & Charlie Power
Dublin Weather
Change location-
Saturday
Mostly cloudy with a couple of showers
Max: 19 °C
Min: 12 °C
-
Sunday
Clouds and sun with a shower; windy
Max: 16 °C
Min: 10 °C
-
Monday
Breezy in the morning; periods of sun
Max: 17 °C
Min: 9 °C
Mostly cloudy with a couple of showers
Max: 19 °C
Min: 12 °C
Clouds and sun with a shower; windy
Max: 16 °C
Min: 10 °C
Breezy in the morning; periods of sun
Max: 17 °C
Min: 9 °C
Most Popular
Most viewed articles in the past 24 hours
Most Commented
Most commented articles in the past 3 days
Download our app
