Community Voice

What Is 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
What Does Membership Look Like?

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 and identify topics of interest, you'll receive via email customized opportunities to share your perspective and thoughts in surveys, focus groups, committees, working groups, and more.

The best part? It's a no-pressure way to get involved. You choose how much -- or how little -- you want to be involved and which topics are of most interest 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? Check out our Frequently Asked Questions or email communityvoice@cff.org.

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Why is Your Voice Needed?

Your unique perspective and experience with CF are vital to the success of CF research, care, and programs at the Foundation and beyond.

Community Voice members already have helped the CF community by doing the following:

  • 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 like palliative care, transplant referral, and lung disease
  • Shaping and leading Community Conferences

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

“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
 

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Want CF Community Input for Your Research?

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.

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