Community Voice: Monthly Results Update
November 2025 Edition
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Dear Community Voice Member,
Welcome to the November 2025 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 joining the CF Lung Transplant Consortium
- Unique Diagnoses Guideline Steering Committee community participants
- Key findings from
Community Input on Clinical Research Language
- An upcoming NACFC Highlights Webinar
- An upcoming
CF Circle on Living with Gastrointestinal (GI) Issues
If you would like to read about past projects, browse previous editions.
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New Members Join the CF Lung Transplant Consortium Steering Committee
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The CF Lung Transplant Consortium (CFLTC) Steering Committee works to advance research and clinical care for people with CF who have undergone or need to undergo a lung transplant. In September, the committee recruited people with CF who have received a lung transplant to serve as members. We are excited to announce that two community members (below) have joined the group for a two-year term. These members will join other community members already serving on the committee in sharing their lived experiences and guiding work related to chronic lung allograft rejection (CLAD), the CFLTC Biorepository and registry data, and strengthen connections between CF patients and lung transplant teams. For more information about the CFLTC, check out their webpage.
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Unique Diagnoses Guideline Steering Committee Recruits Community Participants
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The CF Foundation launched the Unique Diagnoses Guideline Committee to develop recommendations for diagnosing CF in complex and evolving clinical scenarios. In October, the committee began recruiting community members to join clinicians in reviewing scientific literature and creating evidence-based guidelines that will improve diagnosis and care for people with CF. These scenarios include cases where people have CF-related symptoms but do not meet the standard criteria for CF, known as CFTR-related disorder.
Three community members will work with the committee until the guideline is complete (minimum 2-year term). We celebrate Elizabeth Plessner and the two other community members who will be sharing their time and expertise with the committee.
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Getting Community Input on Clinical Research Language
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In August, CF Foundation staff held a focus group to help guide the development of a visual tracker for clinical research projects that the Foundation supports. Community Voice members weighed in on how information should be categorized and described to make it easy for users to find, learn about, and possibly participate in these projects.
Some key takeaways include:
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Participants agreed that adding “studies” to the phrase “clinical research” (clinical research studies) helped clarify what was meant. One participant noted that “’clinical research’ sounds like something the doctor is doing; patients may not realize it’s something they can participate in.”
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Participants were unclear about what “genetic therapies” means. One person suggested that “’therapy’ sounds like talking about your problems.”
- If a study has multiple phases or activities, participants want to learn about the results as each phase or activity closes, rather than waiting until the entire study is finished.
We thank the six Community Voice members who shared their input on this project, and we look forward to sharing more updates on the clinical research tracker!
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Each year, leading minds in cystic fibrosis research and care come together at the North American Cystic Fibrosis Conference to share breakthroughs and spark new ideas. Catch the highlights in a fast-paced, one-hour webinar featuring two top researchers, Dr. George M. Solomon and Dr. Cori Daines, from 7-8 p.m. ET on Wednesday, Dec. 10.
Moderated by Katie Fielding, an adult living with CF, this session will dive into the latest advancements and offer a live Q&A for your most pressing questions. Can't join live? Register to receive a link to the recording after the event.
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CF Circle: Living with Gastrointestinal (GI) Issues
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Because of your feedback about the burden of GI or digestive challenges on a survey earlier this year, the CF Foundation is offering a peer-led CF Circle on the topic of managing life with GI issues on Tuesday, December 9. This small group discussion is for adults with CF ages 18+ and parents or caregivers of people with CF. This is a space where you can connect with others, share experiences, and get support around navigating life with GI symptoms. We will hold this discussion twice – once for adults with CF and once for caregivers:
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Over the coming weeks, Community Voice will share opportunities to participate in projects related to clinical research, mental health, and your experiences this year with the Community Voice program.
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Help Protect Affordable Coverage
Right now, millions of Americans — including families living with cystic fibrosis — are making important decisions about their health coverage for 2026. For the past few years, enhanced Advanced Premium Tax Credits (eAPTCs) have made ACA marketplace plans much more affordable, helping families access the care they need. But these enhanced credits are set to expire at the end of this year — and Congress hasn’t acted yet. That means many families could face higher costs or lose coverage. The CF Foundation is urging Congress to take swift action to protect access to affordable coverage. Add your voice now to urge your legislators to act.
If you or your loved one with CF have faced challenges affording marketplace coverage in 2026 — whether due to high premiums, limited plan options, or concerns about losing financial assistance like eAPTCs — we want to hear your story. Your experiences help us advocate for change.
Open Enrollment for Health Insurance
Compass offers free one-on-one support to help you review your health insurance options, avoid costly surprises, and make sure the care you or your loved one needs is covered. For questions, call 844-COMPASS (844-266-7277), email compass@cff.org, or submit an online request form.
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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 220 members who have written 468 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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