My transition from pediatric to adult care filled me with anxiety and proved to be much more difficult than how the experience was described to me. But, when care centers work together with their patients and listen to their concerns, we can improve cystic fibrosis care and address concerns much sooner.
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We’re highlighting six creators who are helping raise awareness of cystic fibrosis. By sharing parts of their life with CF on paper or on screen, they’re voicing the variety of ways that people experience the disease.
The cystic fibrosis care model is evolving to support people living longer with CF and their increasingly diverse health needs. Catalyzed by the approval of Trikafta® and the COVID-19 pandemic, this adaptive and personalized care model encompasses novel ways to connect clinicians and patients.
The Cystic Fibrosis Foundation hosted a Congressional briefing on February 11 to discuss the benefits of the Foundation's model of specialized, coordinated care and its innovative strategies for drug development, and how they can serve as an example for other rare, chronic diseases.
As a military spouse who makes frequent moves, I have had to transition to new cystic fibrosis care centers 11 times in 21 years. Here are three things I have learned to make each changeover work.
Even though it was scary, I made attending medical appointments during the pandemic a priority.
Since starting the transplant journey, I have learned many things, run into many roadblocks, and been left shocked by other issues.
Watch our vlog to hear us discuss the upcoming film, Five Feet Apart.
Recipients include five innovative programs from around the country that empower the CF community.