SPECTRUM

Latest News | 2-3

* Making Organ Donation the Norm in Ireland

Brendan's Doodles | 3

Member Services | 4-9

*Kerry to Kilimanjaro - Everything you need to know for travelling as a PWCF

*Travel Diary - Chile: The Biggest Adventure of All

Spotlight | 10-18

Emigration and CF

*Cruising on the Costa Brava

*Ambitions for Australia

*Transferring to Texas

CFRI | 19

*Using Data for Good

CFI Conference in Photos| 20-21

Research Update| 22-25

* Covid-19 CF Study Results Summary

* Irish Comparative Outcome Study of CF - Part 2

* Pregnancy Study Update

ECFS Report |26-30

Fundraising| 31-37

* Challenges and Events

* Thank You

CFI Branches |38

NEW TO SPECTRUM!

Last month, Brendan Lonergan, artist and Board Member, contributed to Spectrum and told his story with a series of creative doodles. The community loved these so much that we thought we'd make them a regular feature.

Keep an eye out in coming editions for 'Brendan's Doodles' with his animated thoughts on life as a PWCF.

Welcome to the summer edition of Spectrum

This is a great edition if you are interested in some of the most recent CF research developments, with a report from the European CF Society meeting in Vienna held in early June.

For those of you who have an interest in-post transplant CF care, we also welcome the advertisement by the Mater Hospital of the first Consultant specialising in post-transplant CF care. This has been an important ambition of CFI and is consistent with the Model of Care published in November 2022. The Human Tissue Bill will shortly come into law, we have been told, bringing in the much anticipated ‘Soft-Opt-Out’ organ donation consent provision.

The Kaftrio 35 dispute was not only very challenging for the families impacted, but it also highlighted the gaps and weaknesses in the overall drug reimbursement system in Ireland. The recently published Mazar’s Report highlighted some of these issues, including inadequate communication with patient groups and lack of transparency.

Most new high-tech drugs in Ireland are delayed by between 2436 months after approval by the European Medicines Agency; there is no accelerated access for unmet need and there is no orphan drug designation, which means that we have less or delayed access to drug therapies for those with rare diseases in Ireland than most other European countries.

Thanks to all who attended our annual conference in April. It was an informative and lovely event and it was so good to meet up after the enforced COVID-19 gap. The recordings of the conference will shortly be on our website for those that missed any of the talks. If you have not seen our 60th anniversary documentary launched at the conference, I would strongly recommend - very moving. It is available on our website at https://www.cfireland.ie/aboutus/60-years-of-cfi

We hope you have a lovely summer as together we continue to make progress in CF care in Ireland – much done, more to do.