Latest News

Latest News

Exercise Grant 2017 – Round 2
Friday, 22 September 2017
article thumbnailExercise Grant 2017 – Round 2   Cystic Fibrosis Ireland would like to advise members that Round 2 of the Exercise Grant has now closed. Round 2 of the Grant received a fantastic response with over 100 applications received in three weeks. Cheques will be sent to all successful applicants within two weeks. The next round of the Exercise Grant Scheme will...
Hidden Hero Award for Jillian Mc Nulty
Monday, 11 September 2017
Hidden Hero Award for Jillian Mc Nulty CF Ireland would like to congratulate CF Campaigner Jillian Mc Nulty who win a Hidden Hero Award in the category of Triumph over Adversity. The award comes as recognition of Jillian's campaigning for Orkambi and 20 years of support for CFI over the past 20 years.  Jillian is a fantastic CF Ambassador and...
PPAI Win for Orkambi Protest Photo
Monday, 14 August 2017
  Cystic Fibrosis Ireland would like to congratulate Gary Ashe, a photo journalist with the Star newspaper, who was a prize winner in the Press Photographers’ Awards (PPAI) for 2017. Gary took this great photo of Charlotte Donohoe as part of the protests for Orkambi.  A full list of prize winners is available at http://www.ppai.ie/awards/2017  Philip...
article thumbnailFurther promising news from Vertex for those with F508del and one minimal function gene alteration.  24 July 2017 Further promising news from Vertex for those with F508del and one minimal function gene alteration. This news release covers the VX-152; VX-440 and the VX659 therapies presently undergoing clinical trials. These show very exciting...
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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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