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CF care centers have worked hard to improve health outcomes. A new initiative seeks to improve the quality of our experiences at care centers. 

A day spent visiting a care center proved the perfect introduction to the CF story for legislative staffers.

The Partnerships for Sustaining Daily Care (PSDC) team had the opportunity to hear from people with cystic fibrosis, families and care teams at five Family Education Days at care centers across the country. Here's what we heard.

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.

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.

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.

After several months of telehealth visits with my care team, I returned to the clinic for an in-person visit. Because of COVID-19, some aspects of the visit were different than before.

COVID-19 has introduced telehealth appointments to my cystic fibrosis care. I've learned that advocating for myself is even more important when my care team and I can't be in the same room.