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.
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Linda Bowman
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5 min read
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.
People with cystic fibrosis continue to live longer and healthier lives, and the Patient Registry data support this general trend. To understand what this means for our community, however, it is important to understand how these numbers are calculated and what they represent.
4 min read
The Cystic Fibrosis Foundation, alongside the CF community, urges Congress to pass the PASTEUR Act and the HELP Copays Act.
4 min read
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.
6 min read