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Thursday 8 June 2023 Dublin: 12°C

# CF

All time
Opinion: 'A new cystic fibrosis drug means I'm the healthiest I've been for 20 years'
Ahead of 65 Roses Day tomorrow, med student Bevin Murphy outlines the tough year she’s had as a person with CF, and how a new drug has changed everything.
# Cystic Fibrosis
'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.
# 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”.
# 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.
# 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.
# 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.
# Cystic Fibrosis
'In danger of snatching defeat from the jaws of victory': How tension built ahead of Orkambi deal
HSE and Vertex employees were working long hours behind the scenes to secure the historic agreement.
# 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.
# 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.
# 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.
# 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.
# deal reached
'Life changing' cystic fibrosis drug Orkambi will be available from next month
Simon Harris made the announcement today in the Dáil.
# 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.
# 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.
# 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.
# 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.
# 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.
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.
# 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.
# 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.
# 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.
# 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.
# 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.
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.
# 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.”
# 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.
# 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.
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.
# 65 Roses
"Every day is like running a marathon": Living with Cystic Fibrosis in Ireland speaks to mum of two-year-old Mason and 20-year-old student Amy about their day-to-day experiences with the chronic illness.
# Social Network
Updating your friends - while in a coma
For one Kerry-born woman, it was just a case of having the right friend.
# 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.
# 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.
# 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.
# 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.
# 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.
# 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
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.
# 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.
# Cystic Fibrosis
New CF unit could be built by April 2012
Cystic Fibrosis sufferers could see a specialised unit open in 18 months.