Research News

Research News

article thumbnailIntroduction to International Rare Disease Day Conference  On 28 February 2017, Philip Watt in his role as CEO of Cystic Fibrosis Ireland, Chairperson of MRCG and a member of the Rare Disease Taskforce, opened the International Rare Disease Day Conference in the Royal Hospital, Kilmainham, Dublin. Below is his introduction speech from that...
article thumbnailWhitmarsh, R., & Whitmarsh, L (2016) - Click on the image below to read this interesting research poster
article thumbnailCystic Fibrosis Ireland's Conference & Education Grant is open & we are now accepting applications - click on the image below to read the grant policy & to complete an application form   Applications forms should be completed and send back to This email address is being protected from spambots. You need JavaScript enabled to view it. document.getElementById('cloak1f16e3ae34b7aa98b91a74b7230a2c32').innerHTML =...
article thumbnailPublication of the Orkambi Clinical Trial Data  On 17th of May 2015, the The New England Journal of Medicine (NEJM) published results on a new treatment combining ivacaftor (Kalydeco) with another compound called lumacaftor. This combination is now known as Orkambi and it targets the underlying cause of the CF in people with two copies of the...
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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