Monthly Results Update

Dear Community Voice Member,

Based on feedback we heard from you and in order to align with our goal this year to improve our communication efforts, we would like to share our first-ever edition of the Community Voice: Monthly Results Update!

In these digests you can learn about recent opportunities that Community Voice members have participated in, the feedback, ideas, and insights we gathered, and the next steps or impact of each project. If you have any questions or feedback on how we can improve these digests, please contact us at communityvoice@cff.org.

Best,

The Community Voice Team

Community Voice: End of Year Survey

Each year, members give feedback about their participation experience in Community Voice. Click here to view the survey results which are being used to identify areas of improvement to better embed the voice of the CF community into everything the Foundation does. Click here to see how it also informed the new Community Voice: 2018 Year in Review report, where you’ll find:

Highlights on the impact that Community Voice had on over 70 projects and initiatives in 2018
Testimonies from members about what it means to get involved in the Foundation's work
A sneak peek into the priorities that our team will focus on in 2019

Triple Combination CFTR Modulators Survey & Focus Group

Triple combination CFTR modulator therapies represent a critical turning point in the fight against cystic fibrosis. Community Voice members provided feedback in three focus groups and through email to help the CF Foundation better understand the CF community's perspective and understanding about these therapies. Participants shared their expectations, concerns, and areas of confusion about the upcoming triple combination modulators. This feedback will be used to inform the CF Foundation’s strategy on how best to communicate information about this topic and areas where more information is needed. Click here for more information.

Impact Grants Topics Survey & Call for Applications

The CF Foundation solicited ideas and opinions on what types of community programs the CF community would like to see and have access to through the Impact Grants Program. Feedback showed a large interest in the development of support programs for adolescents with CF or siblings of people with CF. The Impact Grants team is using these results to seek out groups who are already working in these spaces to encourage them to apply, to help guide prospective applicants who might still be creating the scope of their programs and will be considered during the review process. Click here to learn more and apply by March 8th.

Substance Misuse Focus Group

Emotional well-being is an important aspect of living with CF, but many people with CF hesitate to talk to their care teams about substance misuse. CF Foundation conducted a focus group to better understand the CF community's experiences and perspectives on substance misuse, a topic that is crucial to mental health. This discussion informed content about this topic on cff.org and encouraged community members like Marieliz to share their experiences with substance misuse on the CF Community Blog.

The CF Foundation is now conducting a survey to evaluate the need for any potential enhancements to the content posted on cff.org. Click here to participate in the survey by Thursday, March 7th at 11:59 p.m., ET.

Complete Survey

Patient and Family Advisory Council Survey

Traditionally, patient and family advisory councils (PFACs) were established to improve patient care experiences at CF care centers. A survey was conducted to learn more about how Community Voice members get involved with their local PFACs, which revealed that many of these councils have grown to help meet other needs of their local communities. Click here to see the survey results that are being used to help determine how the CF Foundation can provide better support for these groups.

Clinical Trial Surveys & Focus Group

The CF Foundation conducted a survey to understand the needs, challenges, and concerns of the CF community when considering participating in a clinical trial. Click here to view the results that are being used to develop an approach on how to better address these concerns.
A survey and focus group were also held with Research Voice members to improve the CF Foundation’s Clinical Trial Finder, a tool that was developed to make it easier for the CF community to find and enroll in clinical trials. The purpose of the survey was to assess and measure comprehension of the study descriptions, and the focus group was held post-survey to expand on respondents’ feedback. Click here to view the survey results, and click here to view the final changes that were incorporated.
Want to get involved with CF research projects? When you join Research Voice, you’ll receive special training and have a chance to be more involved in research initiatives.

Invite others to join Community Voice by sending them to cff.org/CommunityVoice.

For questions or concerns, please contact the CF Foundation's Community Partnerships department at communityvoice@cff.org.

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