The Patient Registry is an invaluable tool for researchers conducting observational studies about people with CF in the U.S. About 50,000 individuals have been followed in the Registry since its inception in 1986; many of them have been included for over 20 years.
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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.
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.
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.
The Cystic Fibrosis Foundation, alongside the CF community, urges Congress to pass the PASTEUR Act and the HELP Copays Act.
In 1955, the Cystic Fibrosis Foundation was founded by a group of concerned parents who wanted to raise awareness of CF. The strength of the CF community has driven forward incredible advancements in research and care. It’s important to remember that one voice can make all the difference.