As we progress further into 2022, we just want to let you know that CFI remains here for and with you, especially in the continuing challenging times associated with COVID-19 and its impact on so much of our daily lives. As you know, we have a very experienced advice and advocacy team in CF house, led by Sam Byrne, who can help you with queries on a wide range of topics related to health, social welfare, housing, education, independent living, well-being, social & distress and much more (contact details below).
CFI will shortly announce details of how each of our members with CF can access a €100 PPE grant (similar to the previous grant) which is provided to help with the on going costs related to the COVID 19 Pandemic. Watch out for further details on our website and social media later today.
Also in January, look out for the application form for the first round of the Exercise Grant, which will open Monday 24th.
Take a look at the Winter Edition of Spectrum (attached). This issue shows that despite all the challenges, there remains important progress in CF care in Ireland. CFI continues to strive to improve and shape CF services, including better CF Hospital in-patient and out-patient facilities both within and outside of Dublin, including support for a new exercise pod in Crumlin Hospital for example. CFI continues to fund key clinical posts, especially where there are major gaps in services and to provide evidence for permanent posts.
CFI is expanding our support for CF Health Research on issues such as diet; dental health; real world data on the CFTR drug therapies and on pregnancy and fertility. This research is aimed at further improvement of CF services and care, based on careful evidence and with stronger research participation of PWCF and their families.
In early February we will be sending out a CFI Members Survey to ask how you feel we are responding to your needs- your participation and feedback will be very welcome.
Because of the the pandemic we have had to postpone our ‘in person’ Annual Conference. However we are pleased to announce a virtual conference to be held on the evenings of 30th and 31st of March 2022.
We welcome yesterday's announcement that the European Commission has approved the extension of Kaftrio to 6-11 year olds, and we estimate that this drug therapy extension will be available in Ireland by summer of 2022. There are a number of steps that need to be taken within Ireland to ensure that this important therapy is rolled out, in line with previous extensions of CFTR drugs.
Finally we wish you and your family the very best in 2022.
From Philip and Keith on behalf of all the staff team and Board of CFI
CFI Contact details
info@cfireland.ie
Phone lo call 1800 832 022 or 01 496 2433