My evolving relationship with cystic fibrosis brings feelings of guilt and jealousy but also a deep sense of gratitude and understanding.

I got dangerously sick while waiting for double-lung and liver transplants. But then I got a second chance at life after starting Trikafta, even though I have two rare mutations.

Notice and comment process provides an invaluable platform for patients to share real world experiences, concerns, and implications of proposed rules issued by HHS. WASHINGTON, D.C. (March 6, 2025) — ...

In a letter to the U.S. Food and Drug Administration, the Cystic Fibrosis Foundation responded to the agency’s draft guidance entitled “Pulse Oximeters for Medical Purposes — Non-Clinical and Clinical ...

Dear Honorable Members of the Idaho House of Representatives: On behalf of the more than 260 people with cystic fibrosis living in Idaho, the Cystic Fibrosis Foundation urges you to oppose H 138, ...

Dear Chair Collins, Vice Chair Murray, Chair Cole, and Ranking Member DeLauro, On behalf of the undersigned organizations, we ask you to ensure robust appropriations for NIH in the remainder of fiscal ...

Dear Chair Collins, Vice Chair Murray, Chair Cole, and Ranking Member DeLauro, On behalf of the undersigned organizations, we urge you to prioritize robust funding for the National Institutes of ...

Dear Chairman Marshall and Members of the Committee on Human Services, On behalf of the nearly 150 people living with cystic fibrosis in Montana, we write to express our support for HB 398, which ...

Waiting. It’s not just a verb — it’s a state of being, an emotional terrain, a test of patience and resilience. For those of us living with cystic fibrosis, waiting is woven into the fabric of our ...