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Dublin: 7 °C Thursday 19 September, 2019

#Cystic Fibrosis

# cystic-fibrosis - Saturday 6 July, 2019

Irish couple facing deportation in Australia because son has cystic fibrosis granted residency

The couple appealed the decision to refuse them residency which prompted intervention from a government minister.

# cystic-fibrosis - Tuesday 7 May, 2019

Irish couple facing deportation from Australia because son has cystic fibrosis lose appeal

The couple are holding out hope that Australia’s Immigration Minister will intervene.

# cystic-fibrosis - Monday 29 April, 2019

We need to change the disabled parking logo - so people stop telling me that I'm not disabled when I am

‘I find these interventions by members of the public quite insulting and extremely embarrassing,’ writes cystic fibrosis advocate, Benat Broderick, 15.

# cystic-fibrosis - Sunday 31 March, 2019

'Thinking of my donor made me really determined to achieve': How a double lung transplant changed this DCU lecturer's life Second Chance This post contains videos

'Thinking of my donor made me really determined to achieve': How a double lung transplant changed this DCU lecturer's life

Greg Foley had to get a double lung transplant after complications from his Cystic Fibrosis.

# cystic-fibrosis - Monday 28 January, 2019

Opinion: At 12 I started taking Orkambi as a trial drug and it transformed my life

It was scary starting a drug trial for my cystic fibrosis. We didn’t know how I would react but thankfully my breathing and energy levels improved, writes Benat Broderick (15).

# cystic-fibrosis - Sunday 6 January, 2019

'I was studying to be a fitness coach when I needed a double lung transplant'

Luke Doherty was added to the transplant waiting list when one of his lungs collapsed.

# cystic-fibrosis - Monday 3 December, 2018

'If I didn't take part in a clinical trial, I would have died'

Patients in Ireland are being encouraged to ask their doctors about clinical trials.

# cystic-fibrosis - Tuesday 18 September, 2018

Over 2,000 people sign up for organ donor cards in light of Orla Tinsley documentary

Tinsley was on the lung transplant waiting list in the US for nine months.

# cystic-fibrosis - Saturday 14 April, 2018

'Nothing short of a miracle': Irish CF campaigner on recovery after double lung transplant

Orla Tinsley told RTÉ’s Six One News that she feels like a “new woman”.

# cystic-fibrosis - Friday 13 April, 2018

'She was just so ill, it was horrible to see my child like that'

Darcy Grainger is one of about 1,300 people in Ireland who have cystic fibrosis.

# cystic-fibrosis - Sunday 25 February, 2018

'I spend three hours a day on a nebuliser, but exercise helps my mental health'

Ireland has more cases of cystic fibrosis per head of population than any other country.

# cystic-fibrosis - Sunday 11 February, 2018

'We're terrified': Parents of sick children to hold vigil outside Crumlin hospital over trolley crisis

One mother spoke to TheJournal.ie about the battle her child with Cystic Fibrosis has faced.

# cystic-fibrosis - Thursday 11 January, 2018

'We've come so far': Orkambi campaigners hail next step as children can now get 'life-changing' drug

Children between the ages of six and 11 will now be able to access the drug in Ireland after yesterday’s announcement.

# cystic-fibrosis - Tuesday 26 December, 2017

'I have shiny new lungs' -Irish Cystic Fibrosis activist gets double lung transplant

The journalist and Cystic Fibrosis activist has long campaigned for more awareness about the condition.

# cystic-fibrosis - Saturday 23 December, 2017

Christmas without loved ones: 'Try to keep it simple. The first year is very, very difficult'

Christmas can be a tough time for those who have lost a loved one.

# cystic-fibrosis - Thursday 21 December, 2017

Irish Cystic Fibrosis activist Orla Tinsley recovering in hospital after double lung transplant

Tinsley spent the last number of days on life support in a New York hospital.

# cystic-fibrosis - Wednesday 20 December, 2017

Seriously ill Irish Cystic Fibrosis activist makes donor card appeal from intensive care

Orla Tinsley has been instrumental in raising awareness of gaps in CF services over the years.

# cystic-fibrosis - 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.

# cystic-fibrosis - Monday 24 July, 2017

Campaign to raise money for Orla Tinsley's lung transplant care hits target

A fundraiser has been set up to help Irish journalist Orla Tinsley raise money for a lung transplant aftercare.

# cystic-fibrosis - Sunday 7 May, 2017

'Undue fear and confusion': Read the emails Vertex sent to Department of Health about Orkambi

A deal on the cystic fibrosis drug was finally reached last month.

# cystic-fibrosis - Thursday 13 April, 2017

'No parent wants to see their child go before them': Living day-to-day with cystic fibrosis

Cystic fibrosis can be a life-changing condition for entire families.

# cystic-fibrosis - Wednesday 12 April, 2017

'We are so, so happy that it's finally here': Cystic fibrosis patients celebrate deal on Orkambi

Orkambi – as well as the drug Kalydeco – will now be available for CF sufferers from 1 May.

# cystic-fibrosis - Tuesday 11 April, 2017

'Life changing' cystic fibrosis drug Orkambi will be available from next month

Simon Harris made the announcement today in the Dáil.

# cystic-fibrosis - Monday 3 April, 2017

'After the transplant, I looked in the mirror and my eyes weren’t yellow anymore, they were white'

Shauna Morrissey has cystic fibrosis and is campaigning for an opt-out organ donation system.

# cystic-fibrosis - Sunday 2 April, 2017

'Helen didn’t have a peaceful death, she wanted to live so much'

Helen Taylor died while waiting for a double lung transplant in 2014.

# cystic-fibrosis - Monday 6 March, 2017

Deal on 'miracle' cystic fibrosis drug expected in a matter of weeks

Health Minister Simon Harris said that he wants a good deal for the taxpayer and, most importantly, for patients.

# cystic-fibrosis - Tuesday 21 February, 2017

Taoiseach told 'several children have died' waiting for Orkambi drug decision

Orkambi is estimated to cost €159,000 per patient.

# cystic-fibrosis - Sunday 18 December, 2016

Your crash course in... Ireland's battle with Big Pharma for a 'miracle' cystic fibrosis drug

The government is making a last-ditch attempt to settle a better price for Orkambi.

# cystic-fibrosis - Thursday 8 December, 2016

Cystic Fibrosis patients being 'used as pawns' in Orkambi medication negotiations

The drugs are currently too expensive for the HSE to make available to patients.

# cystic-fibrosis - Wednesday 7 December, 2016

Vertex to re-open talks on Orkambi with HSE

Earlier, hundreds of people attended a protest outside Leinster House calling for action on the drug.

# cystic-fibrosis - Thursday 1 December, 2016

Drug company wants Simon Harris to intervene in row on life-changing drug Orkambi

The health minister said he wants “further engagement” between Vertex and the HSE.

# cystic-fibrosis - Tuesday 29 November, 2016

Simon Harris writes to other health ministers in bid to reduce cost of CF drug

The Health minister wants to team up with England, Scotland, Canada and Australia.

# cystic-fibrosis - Monday 28 November, 2016

Opinion: 'My little boy isn't worth the cost of Orkambi'

News broke last night on Twitter that the Government have rejected a drug – Orkambi – that could stop my son’s pain, suffering and lengthen his life, writes Elmarie Tipper.

HSE drug advisor says life-changing cystic fibrosis drug is "not value for money"

It was reported yesterday that the HSE would not be financing the drug.

# cystic-fibrosis - 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.

# cystic-fibrosis - Monday 14 November, 2016

Simon Harris wants to bring down the cost of expensive drugs by buying in bulk

The minister says he is exploring options with other EU countries to bring the cost down.

# cystic-fibrosis - Monday 31 October, 2016

'Orkambi saved my life, other people should get access to it'

The drug, which costs about €160,000 per patient per year, is giving some people with cystic fibrosis a new lease of life.

# cystic-fibrosis - Sunday 18 September, 2016

25 years of breathing through a straw - this is what it's like to live with cystic fibrosis

Luke Doherty has had cystic fibrosis all his life. Now he has a new set of lungs and wants to share his story.

# cystic-fibrosis - Saturday 4 June, 2016

'I want to be a reliable friend. A better family member. I want to be present. I want Orkambi'

TheJournal.ie talks to three people with cystic fibrosis about what has been a difficult week.

# cystic-fibrosis - Wednesday 1 June, 2016

"A travesty" - Cystic fibrosis sufferers angry over lack of funding for potentially life-changing drug

Meanwhile, the cancer drug Pembrolizumab has been approved for reimbursement by the HSE.

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