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.
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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.
We’re spotlighting six authors who have written books based on their experiences with cystic fibrosis. Check out what writing about CF has meant for them, and what they hope their readers will learn from reading their stories.
Coping with cystic fibrosis as a child led to depression. Creativity -- especially singing -- helped me find myself and led to my auditioning for The Voice Australia.
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.
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.
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.