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article thumbnailCystic Fibrosis Ireland and Irish Donor Network Calls for Swift Passing of Legislation for Soft Opt-out Organ Donation Date of issue: Monday September 17, 2018 As TDs get set to return from the summer recess, and RTE airs a documentary on Orla Tinsley’s transplant, the Irish Donor Network has today renewed its call on Government for the...
CFI Invites Your Participation in the Science of CF Survey Cystic Fibrosis (CF), is a complex and multi-organ condition which primarily affects the respiratory and digestive systems. Other medical issues include, CF-related diabetes, malnutrition, liver diseases and subfertility issues, particularly in males, as well as chronic lung infection. Because...
26th Transplant Anniversary
Thursday, 09 August 2018
Happy 26th (Transplant) Anniversary to Brendan McLoughlin from Ballybofey, County Donegal. The longest living CF lung transplant recipient in Ireland. Brendan Mcloughlin (PWCF) celebrates the 26th anniversary of his lung transplant on the 11th of August 2018. Brendan is currently in the very good care of the Mater Hospital in Dublin. He was...
CF Drugs Update: July 2018
Monday, 09 July 2018
CF Drugs Update: July 2018 This is a brief summary of some recent developments in CF drug therapy availability (and likely future availability) in Ireland. OrkambiThe roll out of Orkambi for 6-11 year olds in Ireland is going very well, including since extended use was approved in March 2018 (previously Orkambi was only licensed for 12 year olds...
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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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