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.
I’ve learned that paying too much attention to the idealized lives of people on social media can give me a skewed vision of my own.
At age 5, my daughter started to feel the traumatic emotional effects of cystic fibrosis. Fortunately, the care center’s social worker helped her find a healthy path through it.
I wish people knew that even if I don’t look sick, I still struggle with the mental and physical aspects of cystic fibrosis. Even my family and friends don’t truly understand what this disease does to your mental health.
As a mother with cystic fibrosis, I have learned to prioritize my mental and physical health in order to stay healthy for my two young daughters. I have invited them to come alongside me on my journey as we cherish the little moments in our lives.