How far your voice has reached
Here are just a few projects that have been successfully developed with the influence of your lived expertise and support the future of CF for the current and next generations.
Research
Project COS-CF: Find out how people with CF helped shape what is measured in future research.
Target Product Profiles: Find out how lived experience helped shape the TPP framework and put the preferences of the CF community at the forefront of product development of new antimicrobials/antibiotics, diagnostic tools to detect and monitor lung infections and phage therapy on the CF AMR Syndicate website.
The value and impact of the lived expertise of people with CF and their families in developing these TPPs was reported in Global Forum magazine.
JLA research priorities: Find out how people with CF and their families contributed to discussions that helped identify the research questions that matter most to the CF community.
LifeArc: Find out how insights from our Involvement Group directly influenced LifeArc's decision to fund CF research, supporting the ongoing work of the CF AMR Syndicate and the new Translational Innovation Hub.
Trust projects and campaigns
Not Just Lungs Week: Find out how the CF community helped shape this campaign, highlighting the many ways CF affects people's lives beyond their lungs.
Standards of Care: Take a look at our accessible summary of the UK Standards of Care, co-created with members of the Involvement Group to reflect the information prioritised by the CF community.
Work Forwards: Community feedback helped identify the need for employment support and shape the development of our Work Forwards programme.
Online community forum: Community members identified the need for a dedicated space to connect and discuss experiences, helping shape the relaunch of our online community forum.
CF LIVE Involvement - February 2024
Hear how our Involvement Group members have shared their experience of living with CF to inform the work of the Trust and future research. Members of the community, colleagues, clinical leads, and researchers discuss the power and value of lived experience.
It’s such a joy to speak with people with CF outside the normal clinical environment where there is actually the time to really get a handle on what research means to them and listen to their valuable lived experience.
Robert Gray, Professor of Respiratory Medicine, School of Infection and Immunity, University of Glasgow
I have had the privilege to be asked to participate in a number of events and presentations on behalf of both the CF Trust and wider CF community. It is the work being carried out by LifeArc, as well as others, that brings hope to the CF community
Involvement Group Member
What the CF community have told us will make an enormous difference to future research. It is exciting and energizing to have a refreshed list [of JLA top 10 Research Priorities].
Professor Alan Smyth, Professor of Child Health at University of Nottingham, member of QuestionCF management committee
Last updated July 2026
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