Reflecting the continued momentum we're making in the fight against cystic fibrosis, the latest Patient Registry data show steady gains in survival for people with CF. With this good news comes a lot of excitement, along with some questions.
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Bruce C. Marshall, M.D.
Growing up, the term “life expectancy” was always with me, affecting my choices and expectations. Over time, I learned to tune it out and live my life my way.
Linda Bowman
The CF Foundation Patient Registry collects information on the health status of people with cystic fibrosis who receive care in CF Foundation-accredited care centers and agree to participate in the Registry. This information is used to create CF care guidelines, assist care teams providing care to individuals with CF, and guide quality improvement initiatives at care centers. Researchers also use the Patient Registry to study CF treatments and outcomes and to design CF clinical trials.
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.
Bianca Maldonado-Dequin
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.
Jaclyn Strube
Major Strube