Community Voice

Community Voice provides opportunities for people with cystic fibrosis and their family members to actively shape research and programs that affect the CF community.

What Is Community Voice?

Community Voice is composed of more than 900 members, including people with cystic fibrosis and their families. Members are directly impacting programs and initiatives for the CF community by sharing their experiences and insights with the Cystic Fibrosis Foundation and other organizations and researchers working in CF.

We can't be successful without the input of the CF community, and Community Voice is the avenue for getting that input. Because each person's experience is unique, it's critical to hear from as many people as possible. Whether filling out a survey or participating in a focus group or committee, Community Voice members are helping to shape efforts for the entire CF community.

“We don't know what is important to everyone, and we won't know unless we hear from everyone.” -- Mary Sullivan, Community Voice member

What Does Membership Look Like?

Any individual ages 16 or older who has CF or is a family member of a person with CF can sign up to be a part of Community Voice.

After filling out a registration form about yourself and your interests, you'll receive regular requests via email to share your perspective and thoughts in surveys, focus groups, committees, and working groups.

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 the most interest to you.

Member Benefits

  • Customized opportunities to weigh in on CF programs and initiatives that matter most to you
  • Insider perspective on projects at the CF Foundation
  • Connections to the larger CF community

Want to know more? Check out our Frequently Asked Questions or email communityvoice@cff.org.

Research Voice

Research Voice is a subgroup of Community Voice that is focused on influencing the direction and conduct of research. By partnering with the CF community in this way, the CF Foundation is more able to prioritize research initiatives that matter most to the community, improve the design and conduct of studies, and better educate the community about research.

When you join Research Voice, you'll receive special training and have a chance to be more involved in research initiatives.

Want to join Research Voice? Sign up for Community Voice to receive an invitation to join.

Your Impact

Your unique perspective and experience with cystic fibrosis are vital to the success of research 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
  • Shaping and leading virtual events like FamilyCon and ResearchCon
  • Providing critical feedback on care guidelines like palliative care, transplant referral, and substance misuse 

Check out all of the ways our members have made an impact through Community Voice in our monthly results updates and 2018 Annual 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

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, and academic organizations. If you are looking for insights from people with CF and their immediate family members, in-depth consultations for projects, guidance on survey development, or comprehensive data analysis, please review the Guidelines for Using Community Voice or email communityvoice@cff.org for more information.

To maximize the collective impact of Community Voice, the Cystic Fibrosis Foundation may publish the anonymized and aggregated results of Community Voice projects or share these results with academic researchers for possible publication.

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