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Dublin: 10 °C Sunday 24 March, 2019

#NCPE

# ncpe - 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.

# ncpe - 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.

# ncpe - Wednesday 15 November, 2017

'The system is not adequate': Government sets up new way to judge medicines for rare diseases

Many drugs for rare diseases have been ruled as not “cost-effective” under existing criteria.

# ncpe - Friday 20 October, 2017

'If I stay in Ireland, my daughter could be slipping through my fingers' Pku

'If I stay in Ireland, my daughter could be slipping through my fingers'

People with PKU, a rare genetic disorder, are fighting for access to medication.

# ncpe - Saturday 26 August, 2017

'In danger of snatching defeat from the jaws of victory': How tension built ahead of Orkambi deal Cystic Fibrosis This post contains videos

'In danger of snatching defeat from the jaws of victory': How tension built ahead of Orkambi deal Exclusive

HSE and Vertex employees were working long hours behind the scenes to secure the historic agreement.

# ncpe - Saturday 13 May, 2017

Two boys fighting for access to drug that could help them keep walking

Two boys fighting for access to drug that could help them keep walking

Translarna, the only treatment for boys with a specific type of Duchenne muscular dystrophy, costs €400,000 per patient per year.

# ncpe - Thursday 4 May, 2017

'I'm living proof it works': Patients with severe lung condition call for access to 'life-changing' drug

People are set to lose access to Respreeza at the end of the month.

# ncpe - 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.

# ncpe - Sunday 27 November, 2016

Cystic fibrosis patients 'dismayed' at decision to not fund life-changing drug

Simon Harris has said he has not yet received a decision from the HSE regarding Orkambi.

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