Community Voice

Community Voice is an empowering, virtual opportunity for people with cystic fibrosis and their family members to share their experiences, perspectives, priorities, and knowledge to impact CF research, care, and programs.

A part of achieving our mission is through listening closely to what matters most to people affected by CF, and Community Voice is the avenue for getting that input. Each person's experience is unique, so it's critical to hear from as many people as possible. Whether filling out a two-minute survey or participating in a focus group or committee, Community Voice members are helping to make a difference for every person affected by CF.

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“Community Voice makes me feel powerful. I'm a part of something more, which will make a difference for everyone in the community." — Marieliz Landa, Community Voice member

Any individual ages 13 or older who has CF or is a family member of a person with CF can join Community Voice.

After filling out a form to share more about yourself, you'll receive via email customized opportunities to share your perspective and thoughts.

The best part? It's a no-pressure way to get involved. You choose how much — or how little — you want to be involved on the topics that are most important to you. There is no minimum participation requirement.

Member Benefits

• Partner with the CF Foundation, researchers, and other organizations on topics, initiatives, and programs that matter most to you
• Gain an insider perspective by learning about CF Foundation projects and research through exclusive updates
• Improve the future for the entire CF community — your participation makes a difference.

Want to know more? Explore a selection of current opportunities, check out our Frequently Asked Questions, or email communityvoice@cff.org.

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Community Voice collaborates with a diverse range of researchers, clinicians, and CF Foundation teams on various impactful projects, including focus groups, surveys, committees, working groups, and more. Through these efforts, we ensure that the voices of those living with CF are heard and that their perspectives shape the future of care and research. 

Explore a selection of current opportunities

Community Voice members have already helped the CF community in many ways, such as: 

• Identifying the highest priority areas in CF research, a process that ultimately led to the creation of the Infection Research Initiative 
• Providing critical feedback on CF Clinical Care Guidelines and recommendations like newborn screening, palliative care, and the CF care model 
• Advising on programs and support for navigating life’s challenges with CF, including financial wellness and educational resources 

Check out all of the ways our members have made an impact through Community Voice:

• Monthly Results Updates
• 2023 Impact Report

“What I like the most about Community Voice is the ability to share my experiences and opinions — and seeing that information making a difference." — Aimee Lecointre, Community Voice member

Your unique perspective and experience with CF are vital to the success of CF research, care, and programs at the Foundation and beyond. By amplifying the voices of the CF community — especially those who do not benefit from modulators, the LGBTQIA+ community, and individuals from Black, Hispanic, and other communities of color — we can better understand and address the systemic barriers that contribute to health disparities. Together, we can foster a more inclusive approach that ensures everyone affected by CF receives the care and support they deserve. 

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Are you working on a project that could benefit from the CF community's insights? In addition to the CF Foundation, Community Voice works with external groups including:

• Rare disease organizations
• Care centers
• Researchers
• Academic organizations

Learn more about how you can incorporate community input into your research and use Community Voice.

Community Voice Frequently Asked Questions (PDF)

Your 2023 Impact Through Community Voice (PDF)

Guidelines for Using Community Voice (PDF)

How Going on Disability Led Me to Join the CF Community