In the third plenary, Dr. Wayne Morgan talked about the connection between cystic fibrosis care and the Patient Registry, and introduced a new way for people with CF, along with their families, to help shape the research conducted using the Registry.
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.
Nationwide Effort to Instill Best Practices for Cystic Fibrosis Care is Honored for Excellence
New Patient Data Posted Online Shows Improvements Across Care Center Network
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.
Teams of dedicated health care professionals in a nationwide network of more than 130 Cystic Fibrosis Foundation-accredited care centers partner with people with CF and their families to provide expert care and specialized disease management.
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.