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article thumbnail  We are pleased to let you know that Cystic Fibrosis Ireland has been announced as one of 4 global winners of an international CF patient groups awards scheme. The STRIVE Awards Program recognises excellence and innovation in the Cystic Fibrosis community. The four winners were announced today as: 1. Cystic Fibrosis Ireland2. CF Trust (UK)3. The...
CFI National Conference - Videos
Monday, 09 May 2016
article thumbnailCystic Fibrosis Ireland's 2016 National Conference, Sligo Did you miss out on this years CFI annual conference?? Don't worry because you can now watch the all of the speakers facinating and informative talks back at a time that suits you! Simply click on the video links below to begin!    Welcome & Introduction to CF Ireland's 2016 Annual Conference...
article thumbnailCystic Fibrosis Ireland warmly welcomes granting of planning permission for the building of the new National Children’s Hospital at St James’s Hospital in Dublin. CEO of Cystic Fibrosis Ireland, Philip Watt, urged that 'the building of the new National Childrens' Hospital (NCH) should commence as soon as possible. Today is an important step...
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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