Your lived experience with cystic fibrosis is key to improving outcomes for everyone affected by the disease. That's why researchers, clinicians, and the CF Foundation are eager to hear from as many voices as possible. By sharing your insights and experiences through these Community Voice and other opportunities, you can help shape the future of CF research, care, and programs.
Members of the CF community are invited to share their voice through surveys, focus groups, committees, and more. Below, you'll find a selection of current projects as well as ongoing opportunities to share your experiences.
If you’d like to be the first to know about new opportunities, join Community Voice — a program for people with CF and their family members that ensures future research, care, and programs are shaped by the actual experiences and priorities of people with CF.
Participate in a Current Opportunity
The following projects are seeking participants from the CF community to share their valuable insights.
| CF Menopause & Perimenopause Survey |
This survey explores the experience of menopause among people with CF, addressing topics such as symptoms, conversations with providers, and the use of hormone replacement therapy. Deadline: Complete the survey by May 30 Open to: Adults with CF |
| Clinical Research Executive Committee |
The CF Foundation's Therapeutics Development Network is seeking a member of the CF community not benefitting from modulators to advise on priorities and strategy for clinical studies. Deadline: Join Community Voice by June 15 Open to: Adults with CF who are not benefitting from modulators |
| LGBTQIA+ Experiences With Care |
Researchers seek to interview people with CF who identify as LGBTQIA+ on topics related to their CF care experiences. Deadline: Join Community Voice by June 15 Open to: Adults with CF Join Community Voice |
Other Ways to Share Your Voice
These opportunities invite the CF community to share their experiences with others and are available year-round.
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CF Foundation Community Conferences’ Speaker Database |
Do you want to share your unique experiences with the broader CF community? The CF Foundation’s community conferences — like BreatheCon and ResearchCon — frequently feature speakers from the community to highlight the variety of lived experiences. Use your story to help others feel seen, supported, and empowered.
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| CF Community Blog |
The CF Community Blog is written by the community, for the community. It’s a space to share our experiences, reflections, and perspectives — the good days, the bad days, and everything in between. With topics ranging from emotional health to daily treatments, the blog is a platform to share your unique story.
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