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By educating elected officials and other government decision-makers on the needs of the cystic fibrosis community, the Cystic Fibrosis Foundation works to shape public policy to help our efforts to cure CF and provide all people with CF the opportunity to live full, healthy lives. Below find a listing of our archived state and federal statements, letters, and regulatory comments from 2018–June 2023.
The Cystic Fibrosis Foundation believes in empowering our community to advocate for the needs of people with cystic fibrosis. During an election cycle, it's important to ask questions of candidates to understand how their positions would impact the CF community.
Since our founding in 1955, we have worked alongside the cystic fibrosis community to effectively transform a genetic disease in a single generation — making CF one of the most amazing stories in medicine today. Read about the milestones we've achieved in pursuit of a cure for cystic fibrosis.
Learn about the rights of Cystic Fibrosis Foundation donors.
Advocacy efforts to raise awareness about cystic fibrosis and ignite change don’t just happen on Capitol Hill during events like March on the Hill and Teen Advocacy Day. In fact, advocacy is a continuous effort that begins, and is highly effective, at home.
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.
The Cystic Fibrosis Foundation (“CF Foundation” or “we”) is committed to protecting your privacy. This Privacy Statement explains what type of information we may collect and how we may collect, retain, process, share, and transfer that information from website visitors and other individuals with whom we interact, whether online or offline, why we collect it, and with whom we may share it. It also describes how we protect your personal information and how you can contact us with any questions or to exercise the rights you may have to control our use of your information.
The Cystic Fibrosis Foundation (CFF) is committed to protecting your privacy. This Privacy Statement explains the types of personal information we may collect from website visitors and other individuals with whom we interact, whether online or offline, why we collect it, and with whom we may share it. It also describes how we protect your personal information and how you can contact us with any questions.
The "65 Roses" story dates back to 1965 when an observant 4-year-old, hearing the name of his disease for the first time, pronounced cystic fibrosis as "65 Roses." Today, "65 Roses" is a term often used by young children with cystic fibrosis to pronounce the name of their disease.