Share your lived experience - Now Recruiting
Use your lungs to improve PF care for everyone.
The Lived Experience Panel puts the voice of those affected by PF at the heart of everything OneVoiceILD will do. Share your experience and help drive the future of PF care.
We welcome applications from all walks of life and forms of experience. The role description for members of our lived experience panel can be found in the document linked below.
If you have any questions about the lived experience panel, the steering group, or any further information, please do not hesitate to get in touch at involvement@actionpf.org
Frequently asked questions
What is a lived experience panel?
This lived experience panel provides insight and nuance to the challenges faced in seeking ILD care. The input of the Lived Experience Panel will shape and inform the work of the OneVoiceILD steering group.
What would be expected from me?
As part of the lived experience panel, we would expect you to provide honest, considered, and timely input to questions and discussion points put to the panel.
No travel will be required for you to take part, all aspects of the lived experience panel will take place remotely.
Do I have to have ILD to be involved?
No, you do not have to have ILD to become involved in our lived experience panel. If you have ever be diagnosed with, cared for or known a person diagnosed with PF, we want to hear about your experiences. We would like to receive input from as many points of view as possible.
How big of a commitment is this?
Participation in the lived experience panel is not a large time commitment, and we want to make it as easy as possible for relevant persons to be involved. You will likely have to dedicated around 4hours of your time (total) every 6 months. This will include taking part in surveys and virtual discussions, plus any follow-up.
You can change your mind and leave the group, but please let us know if you decide to.
Will I receive emotional support while taking part?
This panel is not intended as a source of peer support, but we would encourage anyone who needs it to get in touch with the APF Support Line.
Please call us on 01223 785725 Monday to Friday between 9am and 5pm.
Alternatively, you can email us on supportline@actionpf.org