Involvement news and opportunities
If you have any questions or are interested in taking part in any of the opportunities listed here, get in touch with the Involvement team at [email protected].
Help shape the work of the Trust
Review our publications and resources
Your review may tell us which publications you have used, whether it met your needs with the right level of information, explanation and clear language and if there are any publications you would like to see added to the library. The next scheduled reviews are:
- Factsheet for Cystic Fibrosis related Diabetes
- Factsheet on Sweat Tests for diagnosis
- Factsheet on screening for aminoglycoside hearing loss
If you have a particular interest in reading and would like to review, comment and contribute to a specific resource or set of publications please email us or complete our sign up form.
Parent Support during new diagnosis
If you have recently had a child diagnosed with CF and you would like to help us shape the support and resources provided to parents then please email or sign up to the involvement group, we would love to have you involved!
CF LIVE events
We are always looking for people to be part of these events. Whether that is to help inform us of relevant content, Chair the events, share a personal story or answer questions posed by other members of the community then get in touch!
We work with multiple teams to consider how we support the CF community when it comes to managing treatment. This might be improving and streamlining the 'admin' associated with CF (clinic appointments/prescriptions etc) through to medication design (medication delivery devices/dosing etc). We are always looking for people to join us for discussions into these topics. Your experience of managing treatments help us shape how these progress. So if you would be willing to share your thoughts, feelings and ideas around managing treatments please do get in touch! [email protected]
We are always looking for people to join our involvement group, whether this is to review documents, join live Q&A sessions or take part in a focus group. We cover so many topics in the activities we do we are sure there is something for everyone. Current areas of particular interest are:
- Mental Health
- Nutrition and exercise
- Long term effects of Kaftrio
- Diversity in CF
You can register your interest by emailing the involvement team via [email protected]