Latest News

Latest News

CF Ireland Statement on National Review of Hospital Parking Charges Cystic Fibrosis Ireland (CFI) welcomes the decision by Minister for Health Simon Harris TD to review hospital car parking charges at a national level. Cystic Fibrosis is a progressive and long-term disease that affects the lungs and digestive system.  Speaking about the Minister’s...
Job Vacancy - Fundraising Executive
Friday, 16 March 2018
  Job Vacancy - Fundraising Executive   In order to continue and expand our work, we are looking to recruit a Fundraising Executive to join our Fundraising Team. The Fundraising Executive will be responsible for providing support to the Fundraising Team, assisting in developing and managing a broad range of fundraising events and campaigns. The ideal...
Statement from Minister for Health
Thursday, 15 March 2018
Statement from Minister for Health  Cystic Fibrosis Ireland welcomes the statement made by Minister for Health, Simon Harris TD today in relation to the extension of Orkambi to children aged 6 - 11 years. We thank the Minister Harris and the HSE for their on going commitment to CF care in Ireland.  Below is the statement from the Minister for...
Joint North South Rare Disease Conference Rare Disease Day takes place on the last day of February each year to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. To celebrate International Rare Disease Day, on Monday March 5th a Joint North South Rare Disease Conference will...
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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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