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.
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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.
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.
Learn why Anna Kampas, a young adult with CF, faces her challenging treatment regimen head on.
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.
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.
In January, I underwent successful phage therapy -- an experimental treatment in which viruses are used to kill difficult-to-treat bacteria. To get a better sense of the future of this potential treatment option for other people with CF, I chatted with the head of the Infection Research Initiative at the Cystic Fibrosis Foundation.