Latest News

Latest News

Limerick Information Meeting
Thursday, 16 November 2017
Limerick Cystic Fibrosis Information Evening  The Cystic Fibrosis Team at University Hospital Limerick are holding a CF Information Evening on Thursday November 16th 2017 at 7pm in the Absolute Hotel, Sir Harry’s Mall, Limerick. This is an opportunity for parents, partners, family members and friends to come and meet with members of the CF team...
Date of issue: Friday, November 10 2017 Cystic Fibrosis Ireland is delighted to welcome the official opening today (3pm) of the new cystic fibrosis paediatric in-patient facility at Cavan General Hospital by Minister for Health, Simon Harris TD. This unit is a partnership initiative between Cystic Fibrosis Ireland (CFI), Cavan General Hospital and the...
Cystic Fibrosis Art Exhibition May 2018
Wednesday, 01 November 2017
Cystic Fibrosis Art Exhibition May 2018 Sara Cross, PWCF is organising an art exhibition to raise money for Cystic Fibrosis and is seeking support of the CF Community for the event. Hello, my name is Sara Cross and I have Cystic Fibrosis. I have been looking forward to planning an event for CF for a long time and now there is a way. I propose an art...
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...
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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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