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article thumbnailWhen Every Day is a Fight to Breathe - Boxing Legend Walks the Purple Carpet at 'premiere' of new "Fight to Breathe" awareness campaign for Cystic Fibrosis Ireland -   Date of issue: October 19, 2017         Boxing legend Michael Carruth was today firmly in Cystic Fibrosis Ireland's corner at Dublin's Irish Film Institute for the launch of a new awareness...
‘Fight to Breathe’ Cinema Awareness Initiative Following competition, Cystic Fibrosis Ireland was selected for an awareness initiative that will be shown in cinemas throughout Ireland. ‘Fight to Breathe’ is produced by Wide Eye Media and is funded by the Institute of Advertising Practitioners in Ireland (IAPI). CFI wishes to say many thanks to...
Statement from The Pat Kenny Show
Thursday, 05 October 2017
Statement from The Pat Kenny Show Cystic Fibrosis Ireland received the following statement from The Pat Kenny Show in relation to comments made on the programme on Wednesday, October 4th. Pat Kenny and his team at TV3, would like to  apologise for any offence or any upset caused to people with cystic fibrosis and their families by comments made on last...
CFI Statement on The Pat Kenny Show
Thursday, 05 October 2017
CFI Statement in relation to Cystic Fibrosis and Pat Kenny Show Cystic Fibrosis Ireland urges the Pat Kenny Show to clarify that the reason why Ireland has the highest rate of cystic fibrosis (CF) in the world is because we have the highest incidence of people carrying the CF altered gene in the world and not for the reason stated on last night’s...
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As expected, both Orkambi and Kalydeco (for the treatment of children with CF aged 2 years and older) will be subject to a full review by the National Centre for Pharma Economics (NCPE) in Ireland. This is normal for such drugs. This process includes a Health Technology Assessment (HTA) that may take up to 90 working days. We will let you know the outcome of these two reviews as soon as we hear.

We thank  everyone who responded to our recent survey – we received almost 500 responses which is an indication in itself how important this issue is  to our members. CFI is currently finalising our report which will include information drawn from this survey.

In the meantime, Minister for Health, Leo Varadkar TD has agreed to meet with Cystic Fibrosis Ireland following our request for a meeting before Christmas. This will take place before the end of January. CFI welcomes this opportunity to discuss with the Minister issues such as access to new and innovative therapies as well as other key CF related issues including staffing levels in hospitals and investment in key CF centres.

Many thanks to all our members for their support to date.

Philip Watt

CEO Cystic Fibrosis Ireland

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