Growing up with cystic fibrosis, my parents always encouraged me to take responsibility and be open and honest about my disease. That's why my number one piece of advice for parents of kids with CF is to entrust your child with small bits of responsibility at an early age so that they can take care of themselves down the road.
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The Congressional Cystic Fibrosis Caucus unites bipartisan members from both chambers to raise awareness for CF; support CF research, drug discovery, and development; encourage collaboration between the public sector and private organizations; and support access to quality, affordable care for people living with CF.
As children with cystic fibrosis transition toward greater independence at school and at home, they will also take greater responsibility in managing their disease.
Delayed puberty is common among young men with CF, but working with your CF care team to ensure you get good nutrition can help encourage healthy development and growth.
The Cystic Fibrosis Foundation, alongside the CF community, urges Congress to pass the PASTEUR Act and the HELP Copays Act.
To the moms of children with CF who feel isolated in their journey — you are not alone. This is my letter to you, from someone who understands.
With help and support from my parents, I felt empowered to make my first big decision with my cystic fibrosis care: When to remove my G-tube.
Scientists around the world agree that global innovation is needed to address the shortage of effective antibiotics. Our Infection Research Initiative supports much-needed research and development, but new policies are needed to promote a sustainable, robust antibiotics pipeline and a marketplace that rewards innovation.
More states are establishing prescription drug affordability boards to assess and address the cost and affordability of prescription drugs. Learn more about what these reviews mean for you and your loved ones.
At this age, your child with cystic fibrosis is ready to transition from breast milk or formula to whole milk or a high-calorie supplement. Encourage independent eating. Create a consistent schedule and mealtime expectations.