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#Cystic Fibrosis

# 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.

# cystic-fibrosis - Thursday 7 April, 2016

A teenager with a big wish: 'I want to be able to breathe'

Kelsey Nolan has stepped into a campaigning role early in life.

# cystic-fibrosis - Friday 12 February, 2016

Seriously ill Domenic becomes 'Iron Boy' to fight crime in Sydney

It took almost a year to organise his top secret mission.

# cystic-fibrosis - Wednesday 28 October, 2015

From The42 'I don’t think I’ve felt that tired in my life' - Irishman raises thousands after unique Dublin Marathon challenge Hero

'I don’t think I’ve felt that tired in my life' - Irishman raises thousands after unique Dublin Marathon challenge

Kieran McCarthy chats to The42 about his impressive achievement on Monday.

# cystic-fibrosis - Saturday 5 September, 2015

This 73 year old is 'jumping out of a plane' for his 'magnificent grandson'

Alfie’s Army are heading for the skies to raise money for their little man.

# cystic-fibrosis - Wednesday 12 August, 2015

From The42 Here's why 20 rowers are circumnavigating Ireland Challenge

Here's why 20 rowers are circumnavigating Ireland

The crew, featuring participants of mixed ability and experience, set off on 30 May.

# cystic-fibrosis - Friday 3 July, 2015

The 9 at 9: Friday

It’s Friday! Here’s all the news you need to know this morning.

# cystic-fibrosis - Monday 20 April, 2015

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.

# cystic-fibrosis - Wednesday 1 April, 2015

'Dragging myself out of bed on cold mornings, I wonder if I'm mad – but it's for a good cause'

Ever fancied cycling cross-country from Kildare to Galway? It’s not always easy but you’ll raise much-needed funds (and have serious craic).

# cystic-fibrosis - Monday 22 December, 2014

From The42 Happy Christmas - Robbie Keane invites child with CF to Euro 2016 qualifier GOOD DEED

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.

# cystic-fibrosis - Saturday 20 December, 2014

From The42 A Nottingham Forest player is rocking the Abel Xavier look to raise money for cystic fibrosis Beard Envy

A Nottingham Forest player is rocking the Abel Xavier look to raise money for cystic fibrosis

Danny Fox is sporting a spectacularly dyed beard.

# cystic-fibrosis - Monday 1 December, 2014

'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.”

# cystic-fibrosis - Sunday 23 November, 2014

‘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.

# cystic-fibrosis - Sunday 21 September, 2014

'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.

# cystic-fibrosis - Wednesday 10 September, 2014

76-year-old woman diagnosed with cystic fibrosis is Ireland's oldest ever case

The woman is the oldest ever first presentation of the condition in Ireland.

# cystic-fibrosis - Friday 8 August, 2014

Trinity scientists discover how to attack a bacteria that causes cystic fibrosis infections

The common bacteria produces a slimy bio-film that on the lungs that is almost impossible for patients to clear

# cystic-fibrosis - Sunday 6 July, 2014

From The42 'The fat lady hasn't sung yet' - Honey Badger waves goodbye... for now More To Life This post contains videos

'The fat lady hasn't sung yet' - Honey Badger waves goodbye... for now

Nick Cummins opted for a lucrative move to Japan to support a large family that includes two siblings with cystic fibrosis.

# cystic-fibrosis - Wednesday 11 June, 2014

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.

# cystic-fibrosis - Monday 24 March, 2014

"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.

# cystic-fibrosis - Tuesday 4 March, 2014

Deal reached on 10 bed unit for CF patients in Cork University Hospital

There had been a row over how many beds would be secured, but the original plan can now go ahead, said Minister Kathleen Lynch.

# cystic-fibrosis - Saturday 1 February, 2014

Lung transplant patients who had to go to the UK can now stay in Ireland

More than 100 Irish patients had received transplants at a Newcastle Hospital but patients will now be able to get the procedures in Ireland.

# cystic-fibrosis - Sunday 26 January, 2014

Updating your friends - while in a coma

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

# cystic-fibrosis - Monday 6 January, 2014

From The Daily Edge The Irish Christmas Tree Throwing Championship was an epic occasion Lovely Hurling

The Irish Christmas Tree Throwing Championship was an epic occasion

Just look at all the techniques on show.

# cystic-fibrosis - Thursday 19 December, 2013

The 9 at 9: Thursday

Good morning! Here are nine things you want to know as you start your day.

# cystic-fibrosis - Wednesday 14 August, 2013

From The42 Israel Dagg and Crusaders' rap song reaches No. 1 in New Zealand Izzy Does It This post contains videos

Israel Dagg and Crusaders' rap song reaches No. 1 in New Zealand

‘Never Walk Away’ is riding high in the country’s iTunes chart.

# cystic-fibrosis - Sunday 2 June, 2013

Osteoporosis drug aids young people with CF not helped by standard treatments

Recent medical developments have increased the life expectancy of people with cystic fibrosis – but this has also put them at high risk of long-term complications like bone fractures and osteoporosis.

# cystic-fibrosis - Friday 1 February, 2013

The 5 at 5: Friday

5 stories, 5 minutes, 5 o’clock.

# cystic-fibrosis - Monday 21 January, 2013

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.

The 9 at 9: Monday

Good morning. Here are the nine stories you need to know as you start your day.

# cystic-fibrosis - Monday 7 January, 2013

Pics: Limerick man wins Christmas Tree Throwing Championship Competition This post contains images

Pics: Limerick man wins Christmas Tree Throwing Championship

More than 360 people took part in the competition in Ennis, Co Clare at the weekend.

# cystic-fibrosis - Tuesday 18 December, 2012

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.