CF Foundation-accredited care centers play an important role in research. They collect information on the health status of their patients with CF who agree to participate, and report that data to the CF Foundation Patient Registry. The information is available in aggregate to the CF community each year through the Data Report, the Highlights Report, and the Care Center Finder.
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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.
It's that dreaded time again ... Cough, cough, sneeze ... Yuck! I'm prepared, though. And you can be too. Check out the top nine tips I swear by for staying healthy during cold and flu season.
For adult with CF Brent Pace, staying healthy isn't about avoiding life. It's about living mindfully.
After what seems like an hour and too many clicks to count, you finally did it. You booked your flight! A couple weeks leading up to your departure date, panic starts to set in. You go into operation “no one better get me sick” mode.
The following questions and answers address concerns from the community about COVID-19 and school.
Regular CF care center visits are important to maintain your health. The following tips are intended to help you make informed decisions to protect yourself and others from catching and spreading germs while at a care center visit, in the hospital or in any other health care setting.
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.