Call to resolve dispute stopping 35 children receiving CF treatment
HSE and pharma firm Vertex urged by Cystic Fibrosis Ireland to resolve pricing dispute
Cystic Fibrosis patient flees war in Ukraine for access to treatment
Cystic Fibrosis Ireland 65 Roses day starts on Friday
‘We are incredibly thankful to the donors who have given us so much’
Post-transplant patients discuss loss, survivor’s guilt and cocooning during Covid
Almost 60% drop in lung transplants ‘deeply worrying’, says CFI chief
Overall transplant rate fell by 32% in 2020 on previous year, figures show
Chance of organ transplant linked to Covid-19 vaccination status
Irish Donor Network rejects ‘dogmatic’ view of US expert on use of ‘scarce resource’
Sharp drop in transplants and organ donations since pandemic, figures show
Organ transplantation rate fell by 32% last year compared to 2019
Cystic Fibrosis Ireland gears up for online 65Roses fundraising day
Republic has highest incidence of degenerative lung and digestive system condition
I live in direct provision. It’s a devastating system – and it has thrown away millions
Black Irish Lives: The new Government must give asylum seekers their lives, and dignity, back
Minister warned of consequences of mixing Covid-19 and CF patients
Mixing CF and Covid-19 patients ‘potentially disastrous’, Cystic Fibrosis Ireland says
HSE agrees to reimburse cost of new cystic fibrosis treatment
Trikafta to be available to patients aged 12 and over once it receives European approval
Cystic fibrosis drug could make disease a manageable condition
Improvement in lung function of patients treated with Trikafta described as ‘striking’
Government needs to ‘get the finger out’ over Beaumont CF unit
Cystic Fibrosis Ireland launches ‘65 roses day’ fundraising event in April
Living with an invisible condition
People with hidden disabilities such as cystic fibrosis or chronic fatigue syndrome feel stigmatised and not understood
Praise for campaigners as Orkambi deal agreed with HSE
Up to 600 people with cystic fibrosis will now be able to access life-saving drugs
Cystic fibrosis drugs deal hailed as ‘massive victory’
Agreement testament to hard work of Cystic Fibrosis Ireland and patients, says Martin
Cystic fibrosis patients defy Harris with Orkambi protest
Hundreds demonstrate outside Dáil in support of free access to groundbreaking drug
Orkambi-maker among sponsors of CF Ireland’s conference
US pharma Vertex in talks with HSE to reduce high price of cystic fibrosis drug
Germany to provide free access to Orkambi cystic fibrosis drug
About 2,000 German patients to benefit as State continues to negotiate over price
HSE to resume talks on ‘exorbitant’ price of CF drug Orkambi
Vertex Pharmaceuticals wants Minister Simon Harris to take a role in negotiations
Minister refuses to negotiate directly over cost of CF treatment
Drug company calls on Simon Harris to intervene after HSE rules out use of Orkambi
HSE seems set to reject ‘ground-breaking’ cystic fibrosis drug
Orkambi had been ‘considered unjustifiably expensive and not sufficiently cost effective’
Child patients will not receive cystic fibrosis drug due to cost
Study finds the use of the ‘wonder drug’ would cost €21m over a five-year period
New €16.5m cystic fibrosis unit opens in Limerick
The centre will service patients from counties Tipperary, Limerick, Clare and north Kerry
Hundreds with genetic conditions denied treatment abroad
Families are waiting up to two years for an appointment at State’s main genetics centre
Drug pricing deal ‘will delay getting new products to market’
Group for pharma firms criticises ‘artificial’ price clause protecting expensive medicines
Minister proposes EU bulk buying of drugs to lower costs
Health authorities criticised for refusing to fund ‘game-changing’ cystic fibrosis drug
Cystic fibrosis patients dismayed as Orkambi rejected
CF campaigner Orla Tinsley says decision disappointing as trials showed drug works
Cystic Fibrosis drug Orkambi rejected as not cost effective
Price talks urged between Government and maker on €160,000 per patient medicine
National Rare Diseases Office opens in Dublin
Mater Hospital facility will focus on diagnosis, research and testing
Cystic Fibrosis inpatient beds need to treble, says charity
65 Roses Week will hope to raise €100,000 to aid sufferers of the chronic disease
Under control of Crumlin hospital, genetics unit faces issues of ethos
Centre will become department in Our Lady’s, Crumlin, which has Catholic ethos and whose chairman is Archbishop of Dublin
Diagnosis of elderly CF patient offers hope
Cystic fibrosis was only identified in case of 78-year-old woman two years ago
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