Community involvement

Join our growing community to share your experiences and influence the work of the Trust, researchers, and clinicians. 

Getting involved  

The involvement team have been very good at making me feel welcome and involved. The meetings are always  well  run,  and everyone is given the opportunity to contribute.

–  Luke, Trust Wide Involvement Group member who has CF

Members of the CF community are experts by experience. Whether you have CF yourself, or are a parent, partner, or family member of someone with CF, you're welcome to join our involvement group. 

You don’t need any additional skills or experience. You can get involved in as many or as few opportunities as you want to and you’ll be fully supported by the team.

Working with the involvement team was key for our application to ensure that the voice of the community was heard. I really enjoyed working with you and look forward to this being a part of all our other larger funding applications.

–  Ricarda, Senior Philanthropy Manager at the Trust

By getting involved, you’ll be part of a growing network of over 300 people with lived experience of CF who: 

• support the work we do at the Trust, and make sure it's relevant to our community. This could be anything from reviewing new resources to helping shape our projects around the requirements of the CF community.   
• help researchers to shape and design studies to meet the needs of people with CF, making it as straightforward as possible for people with CF to take part.   

What does this mean for you?

• Opportunity to meet other people with CF and their families in an informal, friendly and welcoming environment to share understanding and learnings for living with the condition.
• Identifying the practical considerations and management demands as ‘end users’ of healthcare and research.
• Share your experiences flexibly and conveniently, fitting around your family and work life.
• Feel a sense of community and shared experience.
• Becoming aware of the reach and power of the combined and varied community voice in influencing the future of CF.

To get a better idea of the types of activities you can get involved with and the various topics, head to the News and Opportunities page for more detail!

By joining the Involvement Group, you will receive regular updates and activities we are hosting. There is no expectation for you to accept any of these opportunities, but we hope that you chose to join us to contribute your valuable expertise. 

Last updated July 2024