Community Voice: Monthly Update
August 2026 Edition
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Dear Community Voice Member,
Welcome to the August 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 position paper on Reproductive Health
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New members joining the Hormone Position Paper Committee
- Initial interview details on Women's Menopause Experiences
- Resources for Prenatal Modulator Use
- Upcoming events: CF Circle
If you would like to read about past projects, browse previous editions.
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Publication Announcement: Reproductive Health Position Paper
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In partnership with the CF community, clinicians, and researchers, the CF Foundation has published a new position paper titled, “Reproductive health guidance for the cystic fibrosis community: a Cystic Fibrosis Foundation Position Paper.” The CF community informed the new guidance by:
- Diligently participating on the CF Foundation’s Reproductive Health Position Paper Committee (two community members)
- Submitting comments on the draft guideline, including feedback on how the draft could be improved (17 community members)
The submitted position paper is now available to read (🔒 registration required) in The Lancet Respiratory Medicine Journal, and we would like to thank everyone who helped along the way for this guidance to be published.
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CF Community Members Join Hormone Position Paper Committee
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The CF Foundation is convening a committee to develop a position paper to provide clinical guidance around sex hormones and cystic fibrosis. This includes estrogen use before, during, and after menopause and testosterone use across life phases. Four CF community members are supporting this effort and will work virtually alongside clinicians to review related scientific literature and develop evidence-based guidance. When available, likely in 2027, the draft position paper will be shared with the community during the public comment period for input.
Thank you to the four Community Voice members (pictured below, plus another Community Voice member, not pictured) who will serve on the Hormone Position Paper Committee!
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Interviews Detail Women's Menopause Experiences
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This past winter, Community Voice members were invited to complete surveys and interviews about their perimenopause and menopause experiences. While researchers originally hoped to interview 40 women, the response was so enthusiastic that they expanded to include 67; of these, 53 have scheduled or completed interviews. Though interviews are still ongoing, some of the key takeaways from the study so far include:
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Women with CF may experience a different level of symptom severity compared to the general population. When asked to rate their experience of various menopause symptoms (such as hot flashes, sleep problems, anxiety, and joint and muscular discomfort) on a scale from “none” to “extremely severe,” women with CF rated their symptoms as more severe, on average, than women without CF.
- It can be tough to figure out what’s causing particular symptoms. Many of the symptoms that are common among women in perimenopause — such as
sleep problems, brain fog, joint pain, and weight gain — may also be associated with modulator use or simply with having CF. When it’s difficult to pinpoint what’s causing a symptom, it can also be difficult to figure out how to treat it.
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Provider dismissal is common. Many interviewees shared stories of providers attributing their menopause symptoms to CF or other causes, leading to delays in getting the care they need. While women wished that more providers were knowledgeable about the overlap between CF and menopause, they emphasized that having a menopause specialist is important, regardless of whether that provider is familiar with CF.
Results from the interviews will be combined with survey data to form a more comprehensive picture of how women with CF experience perimenopause and menopause. Researchers will use these findings to help shape clinical care guidance and improve health outcomes for women with CF as they age. Stay tuned for more updates from this work!
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New Resources for Prenatal Modulator Use
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The PROTECT Workshop, held in November 2024, brought together researchers, clinicians, and five Community Voice members to discuss prenatal modulator use to prevent CF complications in babies with CF. Workshop participants collaborated with CF Foundation staff to develop new educational resources about prenatal modulator use for expecting parents whose babies may have CF, CF care teams, and non-CF health care providers. These resources explain how CF may be detected before birth, how modulators work, the potential benefits of in-utero treatment with modulators, and questions to guide discussions with providers, and are available for download on the CF Foundation’s website.
PROTECT Workshop participants are currently working on designing a clinical trial to study in-utero modulator use. We will bring you updates as this work continues!
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CF Circle: Life Without Modulators
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CF Circles are topic-driven small-group discussions where adults with CF, parents, and caregivers can virtually connect with others about shared experiences.
On August 18, the CF Foundation will host a CF Circle for adults with CF and parents and caregivers of individuals with CF who are not eligible for or not able to tolerate a CFTR modulator (e.g., Alyftrek, Trikafta, Symdeko, Kalydeco, or Orkambi). Join the conversation to connect with and find validation from others who understand what you are going through. Contact cfcircles@cff.org for questions.
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This summer, watch for Community Voice opportunities to provide input on the CF Annual Insights Survey, Infection Prevention International Guideline Public Comment, and more!
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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 231 members who have written 486 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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