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Dublin: 9 °C Wednesday 12 December, 2018

#CF

# cf - Saturday 14 April, 2018

From TheJournal.ie 'Nothing short of a miracle': Irish CF campaigner on recovery after double lung transplant Orla Tinsley

'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”.

# cf - Friday 13 April, 2018

From TheJournal.ie 'She was just so ill, it was horrible to see my child like that' 65 Roses Day

'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.

# cf - Sunday 25 February, 2018

From TheJournal.ie 'I spend three hours a day on a nebuliser, but exercise helps my mental health' Cystic Fibrosis

'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.

# cf - Wednesday 20 December, 2017

From TheJournal.ie Seriously ill Irish Cystic Fibrosis activist makes donor card appeal from intensive care Orla Tinsley

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.

# cf - Saturday 26 August, 2017

From TheJournal.ie '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.

# cf - Monday 24 July, 2017

From TheJournal.ie Campaign to raise money for Orla Tinsley's lung transplant care hits target Cystic Fibrosis

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.

# cf - Sunday 7 May, 2017

From TheJournal.ie 'Undue fear and confusion': Read the emails Vertex sent to Department of Health about Orkambi Cystic Fibrosis

'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.

# cf - Thursday 13 April, 2017

From TheJournal.ie 'No parent wants to see their child go before them': Living day-to-day with cystic fibrosis 65 Roses Day

'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.

# cf - Wednesday 12 April, 2017

From TheJournal.ie 'We are so, so happy that it's finally here': Cystic fibrosis patients celebrate deal on Orkambi End Of A Long Road

'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.

# cf - Tuesday 11 April, 2017

From TheJournal.ie 'Life changing' cystic fibrosis drug Orkambi will be available from next month Deal Reached

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

Simon Harris made the announcement today in the Dáil.

# cf - Monday 3 April, 2017

From TheJournal.ie 'After the transplant, I looked in the mirror and my eyes weren’t yellow anymore, they were white' Organ Donation

'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.

# cf - Sunday 2 April, 2017

From TheJournal.ie 'Helen didn’t have a peaceful death, she wanted to live so much' Organ Donation

'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.

# cf - Wednesday 7 December, 2016

From TheJournal.ie Vertex to re-open talks on Orkambi with HSE Cystic Fibrosis

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.

# cf - Thursday 1 December, 2016

From TheJournal.ie Drug company wants Simon Harris to intervene in row on life-changing drug Orkambi Cystic Fibrosis

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.

# cf - Tuesday 29 November, 2016

From TheJournal.ie Simon Harris writes to other health ministers in bid to reduce cost of CF drug Orkambi

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.

# cf - Monday 28 November, 2016

From TheJournal.ie Opinion: 'My little boy isn't worth the cost of Orkambi' Cystic Fibrosis

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.

From TheJournal.ie HSE drug advisor says life-changing cystic fibrosis drug is "not value for money" Orkambi

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.

# cf - Sunday 27 November, 2016

From TheJournal.ie Cystic fibrosis patients 'dismayed' at decision to not fund life-changing drug Orkambi

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.

# cf - Monday 31 October, 2016

From TheJournal.ie 'Orkambi saved my life, other people should get access to it' Cystic Fibrosis

'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.

# cf - Wednesday 1 June, 2016

From TheJournal.ie "A travesty" - Cystic fibrosis sufferers angry over lack of funding for potentially life-changing drug Not Cost-effective

"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.

# cf - Monday 20 April, 2015

From TheJournal.ie Another €1 million needed for cystic fibrosis patients in Limerick Staffing

Another €1 million needed for cystic fibrosis patients in Limerick

The state-of-the-art new cystic fibrosis unit in University Hospital Limerick was built thanks to charitable fundraising efforts.

# cf - Monday 22 December, 2014

Happy Christmas - Robbie Keane invites child with CF to Euro 2016 qualifier

Nine-year old Cody Nolan will be a guest in the striker’s private box at the Aviva.

# cf - Monday 1 December, 2014

From TheJournal.ie 'Helen didn't get lungs ... but we’ll make sure other people get them because of her' Rest In Peace

'Helen didn't get lungs ... but we’ll make sure other people get them because of her'

“She wanted to live with every fibre of her being.”

# cf - Sunday 23 November, 2014

From TheJournal.ie ‘Luke’s Christmas wish is that his mammy gets new lungs’ Cystic Fibrosis

‘Luke’s Christmas wish is that his mammy gets new lungs’

Helen Taylor, a Cystic Fibrosis sufferer, has been on the organ transplant waiting list for almost a year.

# cf - Sunday 21 September, 2014

From TheJournal.ie 'You could have lung disease, but won't notice if your only exercise is shopping' Awareness

'You could have lung disease, but won't notice if your only exercise is shopping'

Most people are unable to spot the warning signs of the disease.

# cf - Wednesday 11 June, 2014

From TheJournal.ie Opinion: It's still hard to express the sadness that comes with being unable to have children Fertility

Opinion: It's still hard to express the sadness that comes with being unable to have children

In the past, people with cystic fibrosis typically died in childhood. But now that we have longer lifespans we are often faced with a new problem: infertility.

# cf - Monday 24 March, 2014

From TheJournal.ie "Every day is like running a marathon": Living with Cystic Fibrosis in Ireland 65 Roses

"Every day is like running a marathon": Living with Cystic Fibrosis in Ireland

TheJournal.ie speaks to mum of two-year-old Mason and 20-year-old student Amy about their day-to-day experiences with the chronic illness.

# cf - Sunday 26 January, 2014

From TheJournal.ie Updating your friends - while in a coma Social Network

Updating your friends - while in a coma

For one Kerry-born woman, it was just a case of having the right friend.

# cf - Friday 1 February, 2013

From TheJournal.ie Kalydeco to be made available to Cystic Fibrosis patients in Ireland Kalydeco

Kalydeco to be made available to Cystic Fibrosis patients in Ireland

The decision was announced today by Minister James Reilly after an agreement was reached with the HSE and the manufacturers of the drug.

# cf - Monday 21 January, 2013

From TheJournal.ie Negotiations underway over new CF drug deemed 'too expensive' Cystic Fibrosis

Negotiations underway over new CF drug deemed 'too expensive'

Irish health authorities will negotiate the price of a “groundbreaking” new treatment for cystic fibrosis, which would currently cost the State more than €28 million annually.

# cf - Tuesday 18 December, 2012

From TheJournal.ie St Vincent’s to provide two extra rooms for Cystic Fibrosis patients Cystic Fibrosis

St Vincent’s to provide two extra rooms for Cystic Fibrosis patients

Two in-patient rooms will be held in reserve for emergency CF admissions – but patients say the arrangement falls short.

# cf - Thursday 24 May, 2012

From TheJournal.ie Why do females fare worse than males with cystic fibrosis? Cystic Fibrosis

Why do females fare worse than males with cystic fibrosis?

A new study from the Royal College of Surgeons in Ireland shows that the female hormone oestrogen has a role to play in this.

# cf - Tuesday 8 November, 2011

From TheJournal.ie New Cystic Fibrosis treatment launched Cystic Fibrosis

New Cystic Fibrosis treatment launched

The ‘Podhaler’ is a wireless inhaler that reduces the time needed to receive antibiotic treatment from almost an hour a day to just five or six minutes.

# cf - Tuesday 4 October, 2011

From TheJournal.ie Cystic Fibrosis ward to open at Crumlin hospital today Cystic Fibrosis

Cystic Fibrosis ward to open at Crumlin hospital today

President Mary McAleese will be at Our Lady’s Children’s Hospital today to open a state-of-the-art, four-bed ward for patients with Cystic Fibrosis.

# cf - Monday 24 January, 2011

From TheJournal.ie Irish hospitals to introduce routine CF tests for newborns CF

Irish hospitals to introduce routine CF tests for newborns

The HSE has announced that it plans to introduce a newborn screening programme for cystic fibrosis.

From TheJournal.ie The 9 at 9: Monday 9 At 9

The 9 at 9: Monday

Nine things you need to know by 9am: Deadlines loom for would-be Fianna Fail leaders, for a final date for General Election 2011 – and for the person who wants to be the one to flick the ‘crush’ switch on Sean FitzPatrick’s BMW.

# cf - Thursday 14 October, 2010

From TheJournal.ie CF unit contract to be signed this week Cystic Fibrosis

CF unit contract to be signed this week

St Vincent’s Hopsital says it will finalise the agreement to build its special unit in the next 24 hours.

# cf - Wednesday 13 October, 2010

From TheJournal.ie New CF unit could be built by April 2012 Cystic Fibrosis

New CF unit could be built by April 2012

Cystic Fibrosis sufferers could see a specialised unit open in 18 months.

# cf - Sunday 10 October, 2010

From TheJournal.ie The 9 at 9: Sunday 9 At 9

The 9 at 9: Sunday

9 things you absolutely need to know by 9am.