Community Voice: Monthly Results Update
March 2026 Edition
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Dear Community Voice Member,
Welcome to the March 2026 edition of the Monthly Results Updates!
In these digests, we share the impact Community Voice members are making through participation in recent opportunities. In this month’s edition, we’re sharing more about:
- New members from the PRIME Working Group
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Community representatives join the Health Equity Advisory Team (HEAT)
- Details for an upcoming Clinical Trials Webinar
- Results from the Community Voice annual survey
- An upcoming CF Circle on Pre-and Post-Transplant Experiences
If you would like to read about past projects, browse previous editions.
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PRIME Working Group Welcomes New Community Members
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The CF Foundation’s Prioritizing Research in Mental Health (PRIME) Working Group brings together researchers and community members to work on clinical research projects that improve the understanding, prevention, diagnosis, and treatment of mental health concerns for people with CF and their loved ones.
In March, the group welcomed two new community members, pictured below. Thank you for sharing your time, energy, and expertise to improve mental health research for the CF community!
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Community Representatives join Health Equity Advisory Team
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Six CF community members – including four people with CF, a parent of a child with CF, and a spouse of someone with CF – are joining the Health Equity Advisory Team. Researchers at the University of Seattle are convening this group to gather input on surveys, tools, and quality improvement processes to support better care for all people with CF. They will focus on factors that can influence health equity, including access to transportation, education, financial resources, race and ethnicity, gender identity, or disability status (visible and invisible).
Thank you to the community members below (two not pictured) supporting this important work!
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Community Update: Clinical Trials Webinar
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Join us on April 27 from 7-8 p.m., ET for a live webinar covering the latest updates in CF clinical research, including updates on genetic therapies, modulators, infection, CF-related diabetes, and more. You’ll learn what’s happening now, what it could mean for people with CF, and how you can participate in research if you’re interested — plus get your most pressing questions answered during the live Q&A. Spanish language interpretation will be available.
Register now to save your spot and stay connected to the latest in CF research.
Can't join live? Register to receive a link to the recording after the event.
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CF Circle: Pre-and Post-Transplant Experiences (with Caregivers)
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Join a Group Discussion About Your Pre-and-Post Transplant Journey
CF Circles will host a small group discussion at 7 p.m. ET on April 14 for individuals with CF (and/or their parents/caregivers) who are considering a transplant (of any organ), have been referred for one, or are living life post-transplant.
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Celebrations in the Month of March
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National Donate Life Month
We are proud to recognize April as National Donate Life Month. We invite you to use the month to raise awareness about the importance of organ, eye, and tissue donation and transplantation while honoring those who have already saved countless lives through their donation. Join us in celebrating the value of organ donation and how it impacts people’s lives this month and beyond. With more than 100,000 people waiting for a lifesaving transplant, you can help by registering as an organ donor today.
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This spring, look out for Community opportunities related to how digestive symptoms are diagnosed and treated, including nutrition and symptoms during pregnancy, and sexual and reproductive health.
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Survey: Perspectives on CFTR Modulators
Researchers with the CF Pharmacy/Clinical Pharmacology Alliance for Research and Collaboration (CF-PHARM) are seeking to better understand how people with CF and their caregivers make decisions about taking CFTR modulators, including Trikafta and Alyftrek. They invite adults with CF and caregivers of people with CF to take a 15-minute anonymous survey by April 20:
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Please note this is an external opportunity hosted beyond the CF Foundation.
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Survey: CFTR Modulator Use During Pregnancy Community
Researchers at the University of Arkansas are surveying the CF community about CFTR modulator use during pregnancy and breastfeeding. By understanding people’s concerns about and interest in taking modulators during pregnancy, the researchers hope to find out what information could be better communicated between health care providers and families. People with CF and their family members (including parents, caregivers, spouses/partners, and children of people with CF) can take the survey now through April 27:
Participants who complete the survey will be entered to win one of 20 $50 gift cards.
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Please note this is an external opportunity hosted beyond the CF Foundation.
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Sharing Insights & Experiences Through the CF Community Blog
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Check out these recent blog posts by Community Voice members! Community Voice currently has 228 members who have written 478 posts since the CF Community Blog launched in 2015.
Interested in sharing your story? The CF Community Blog wants to hear from you.
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