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 state and federal statements, letters, and regulatory comments.
Statements, letters, and regulatory comments issued before July 2023 can be found in our archive.
The Cystic Fibrosis Foundation joined the coalition in an amicus brief and related statement to explain how the court’s decision would threaten patients’ and providers’ ability to rely on the U.S. Food and Drug Administration’s decisions regarding drug safety.
In feedback provided to the U.S.
The Cystic Fibrosis Foundation, European Cystic Fibrosis Society, and Cystic Fibrosis Europe provided comments to the European Medicines Agency on draft guidance on establishing efficacy of a new treatment based on single-arm trials.
The Cystic Fibrosis Foundation and the Cystic Fibrosis Therapeutics Network sent a letter to the U.S. Food and Drug Administration’s Center for Biologics Evaluation and Research to request a meeting to discuss novel approaches to clinical trial design for cystic fibrosis nucleic acid-based therapies.