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#sma

# sma - This year 2022

'Timing is key': Parents call for inclusion of rare genetic disease in newborn heel prick test
# Sma
# Sma

'Timing is key': Parents call for inclusion of rare genetic disease in newborn heel prick test

Jun 28th 2022, 6:00 AM 12,055 Views 2 Comments

SMA is a degenerative disease that causes damage to nerves that develop muscle function and allow children to eat, move and breathe.

# sma - All time

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

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

Jun 11th 2019, 2:00 PM 8,646 Views 5 Comments

The drug has been approved for children with SMA Type I, II or III on “an exceptional and individualised basis”.

'We need to do right by families': Call for HSE to fund drug for rare disease after NHS approval
# Spinraza
# Spinraza

'We need to do right by families': Call for HSE to fund drug for rare disease after NHS approval

May 15th 2019, 12:29 PM 6,260 Views 4 Comments

Spinal muscular atrophy weakens muscles and causes problems with movement, breathing and swallowing.

'We are failing these children spectacularly': Row over drug with 'exorbitant' cost rumbles on
# Spinraza
# Spinraza

'We are failing these children spectacularly': Row over drug with 'exorbitant' cost rumbles on

Mar 10th 2019, 8:00 AM 9,254 Views 13 Comments

Negotiations, and clashes, over the price of Spinraza are ongoing behind the scenes.

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

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

Feb 28th 2019, 12:52 PM 10,400 Views 28 Comments

About 26 children with SMA, a rare muscle-wasting condition, could benefit from Spinraza.

'A price has been put on the value of life': HSE will not reimburse drug for children with rare condition
# Spinraza
# Spinraza

'A price has been put on the value of life': HSE will not reimburse drug for children with rare condition

Updated Feb 25th 2019, 7:54 PM 23,437 Views 62 Comments

The HSE said the current price of Spinraza – more than €20 million over five years – is not cost-effective.

'You wouldn't tell a child they couldn't have chemo, but our son is being denied the medication he needs'
# Spinraza
# Spinraza

'You wouldn't tell a child they couldn't have chemo, but our son is being denied the medication he needs'

Feb 3rd 2019, 4:00 PM 19,383 Views 17 Comments

Parents of children with a rare genetic condition are fighting for access to a potentially life-changing drug.

'If she gets another chest infection she probably won't make it, that’s the reality'
# SPINAL MUSCULAR ATROPHY
# SPINAL MUSCULAR ATROPHY

'If she gets another chest infection she probably won't make it, that’s the reality'

Jan 7th 2017, 7:25 AM 31,868 Views 16 Comments

Nellie and Lara are the only two children in Ireland with Spinal Muscular Atrophy Type 1 – an extremely rare genetic condition.

Small and medium businesses could* deliver 20,000 jobs
# Jobswatch
# Jobswatch

Small and medium businesses could* deliver 20,000 jobs

Dec 28th 2012, 6:45 AM 2,857 Views 11 Comments

The Small Firms Association makes optimistic prediction for 2013 – *but only if SMEs are “placed at the heart of economic policy”.