Involvement 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].
Opportunities
There are lots of different ways you can get involved. There's a whole range of topics and activities you can get involved with.
Topics
This is a selection of the range of topics we cover:
- Research and clinical trials, including genetic therapies and alternatives to modulators
- Early and late diagnosis, and carrier status
- Growing older with CF – clinical and lifestyle considerations
- Access to medication
- Parenting and fertility
- Education and employment
- Mental health and wellbeing
- Nutrition and exercise
- Health issues such as lung health, gut health, CF diabetes
- Transplant
- Finances and cost of living
- Infection prevention
Activities
There is a whole range of involvement activities:
- Reviewing documents and information resources and giving feedback
- Discussions on managing treatment – to improve medication design and streamline admin processes.
- Joining CF live events – chairing or sharing a personal story
- Taking part in a focus group
- One to one interviews
- Opportunities to speak at events
- Joining project groups/steering groups
- Informing awareness campaigns about life with CF
- Helping to determine priorities for research and the trust
- Reviewing research applications for funding
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Shape our information and support
Provide your feedback, thoughts and ideas to help us make sure that the information and support we develop and provide meets the needs of everyone with CF across the UK.
Find out more about our Information, Support and Programmes Advisory Group
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Join our community committees – make a real difference
Help shape cystic fibrosis (CF) services, research, and resources by joining one of our community advisory groups.
Members include people with CF, parents, carers, partners, siblings, and bereaved family members who contribute lived experience to strategic decisions, research access, clinical information, quality improvement and innovation.
What you can join
- UK CF Registry Steering Committee (3‑year term) – strategic direction for the registry
- UK CF Registry Research Committee (1‑year term) – reviews research access requests
- Clinical Advisory Group (2‑year term) – using lived experience of clinical care to input on information and education
- Quality Improvement Working Group (2‑year term, max 3 terms) – improve patient experience and staffing tools
- Research Grant Review Committee (3‑year term) – aid decisions on research funding
- Information Support and Programmes Advisory Group (initial 2‑year term) – adults, carers and family advisory groups listed
- Research Scientific Oversight Board (3‑year term) – oversees CTAP-related work
- CF Lung Health Network Community Advisory Board (2‑year term) – governance group for the Translational Innovation Hub Network for CF Lung Health and Infection
Why join?
- Bring lived experience to decision-making
- Influence research, care and resources used by the CF community
- Work alongside clinicians, researchers, and fellow community members
Interested in joining or want more details about roles? Please email [email protected].
Sign up today
Everyone's lived experiences of CF are valuable, whether you have CF yourself or are a parent, partner or family member of someone with CF. If you're unsure about sharing your experiences, we're happy to book in a quick chat to help you.
You can register your interest by emailing the involvement team via [email protected].
Last updated April 2026
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