Dear Community Voice Member,
The 39th annual North American Cystic Fibrosis Conference (NACFC) brought together CF scientists, researchers, care team members, and community members virtually and in-person to share the latest advances in CF research, care, and drug development. More than a dozen Community Voice members presented at this year’s conference, including panels, workshops, and posters. The results presented represented the perspectives of hundreds of Community Voice members who shared their experiences through surveys, focus groups, committees, and more.
Below are just a few of the many ways that your contributions through Community Voice helped keep the voice of the CF community front and center during NACFC:
-
Your responses to the CF Foundation’s Long Term Strategic Planning and follow-up surveys were highlighted, with a focus on aging concerns that the CF community raised (watch Workshop 37 here). Additional survey data was presented alongside perspectives of community members who are not eligible for or able to tolerate modulators due to side effects (watch Workshop 33 here).
- Community Voice members helped researchers and clinicians better understand how
different identities and life experiences are interconnected with CF, their access to care, and health outcomes. This included interviews with people with CF who identify as Hispanic or people of color (watch Workshop 2 here) and as LGBTQIA+ as part of the PRIDE CF study (watch Workshop 18 here).
- Community members who have taken
modulators while pregnant or breastfeeding to treat their child with CF shared their experiences during an NACFC session, where researchers also presented on the science and safety of these approaches (Watch Symposium 12 here).
To access all recorded sessions and workshops, please click here.
For more information about NACFC, please visit nacfconference.org.
If you are interested in speaking at a future conference like NACFC or BreatheCon 2026, please complete the speaker interest form.
The surveys, focus groups, and committees you participate in all year long really add up and make such a difference. We hope you are also proud to see how the impact that you have directly made on CF research and care shined through at this year’s NACFC.
Sincerely,
The Community Voice team
(Ariel, Caitlin, Christie, Christina, Enid, Ijeoma, and Leah)
