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.
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.
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.
A cystic fibrosis diagnosis must not disqualify an individual from life-saving care.