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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...
article thumbnail International study published in Lancet shows that Orkambi improves the lung function of children with CF in less than 2 weeks. 24 July 2017 The international study, which included researchers from Imperial College London at the Royal Brompton Hospital, showed that Orkambi can improve the lung damage caused by the genetic disease in under two...
Job Vacancy - Community Events & Digital Marketing Coordinator  We are currently recruiting for the position of Community Events & Digital Marketing Coordinator within the Cystic Fibrosis Ireland (CFI) Fundraising Team. The Community Events & Digital Marketing Coordinator is responsible for coordinating CFI Fundraising Events as well as driving...
article thumbnailHuman Tissue Bill set to improve Organ Donation rates in Ireland   In a welcome move, the Government announced on the 11 July that they will proceed with drafting a Human Tissue Bill that will focus on 3 main areas. These are: The removal, retention, storage, use and disposal of human tissue from deceased persons The general conditions for 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

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