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.
- Developing the Trust strategy and brand refresh to ensure relevance to the community we serve
- Re-launching the online community forum to provide a space for discussion as identified by our community members
- Development and promotion of the CFTruths Campaign, raising awareness of the themes of importance our community want others to know about CF
- Securing substantial funding from LifeArc to tackle ongoing lung infections that people with CF said hindered their lives
- Shaping a successful National Lottery funding proposal identifying the need for employment support (resulting in the launch of the Trust’s Work Forwards Programme)
- Reviewing the draft Cost of CF research survey to ensure the questions captured the relevant financial and economical implications of living with, and managing CF
- Defining and designing the groundbreaking CF STORM study to capture the outcomes and measures that people with CF identified as important to them when deciding to stop nebulized treatments
- Sharing their experiences of using exercise as an airway clearance technique which enabled successful funding from NHIR to run the ExACT-CF study
- Joining a series of discussions to inform and co-produce the James Lind Alliance – Refreshed top 10 Research Priorities to provide strategic direction to the CF Research community
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 2024
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