Parents of children with cystic fibrosis may be anxious about whether a school or day care can accommodate their child's special needs. Students with CF may worry about being different from their peers. As a teacher, you can provide reassurance to both parents and students by working with them and CF health care professionals to maximize your student's overall learning experience, while helping to maintain his or her health.
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Our federal and state advocacy efforts support our mission of ensuring that everyone with cystic fibrosis has access to high-quality, specialized care. We evaluate policies and legislation through one lens: How would this impact people with CF and their families?
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.
Each year, hundreds of volunteers from across the country participate in advocacy events that help state and federal policymakers and decision-makers understand the complexities of living with cystic fibrosis and the importance of having access to affordable, adequate care and supporting research and drug development.
The Cystic Fibrosis Foundation along with directors of Colorado's Cystic Fibrosis care centers sent a letter to the state's Prescription Drug Affordability Board commenting on the list of prioritized drugs eligible for an affordability review.
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European Cystic Fibrosis Society, and Cystic Fibrosis Europe provided comments to the European Medicines Agency on draft guidance on establishing efficacy of a new treatment based on single-arm trials.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 Foundation sends a letter to leaders of the House Energy & Commerce Committee urging passage of H.R. 3008, 3793 and 3810 which would help mitigate drug shortages and ensure patients will have access to all necessary medications.
In a letter sent to Colorado’s Prescription Drug Affordable Board, the Cystic Fibrosis Foundation provides feedback on the board’s review of Trikafta®, including concerns around the board’s proposed methodology, and provides a compilation of published data on Trikafta’s effects on clinical outcomes and other health care utilization.
Ad hoc patient coalition provides comments to the Centers for Medicare and Medicaid Services on draft guidance related to the Medicare Prescription Payment Plan, arguing the importance of the plan in ultimately lowing the cost of prescription drugs for enrollees.
CF Foundation provides comments to the U.S. Department of Health and Human Services and the Centers for Medicare and Medicaid Services responding to the 2024 Medicare Physician Fee Schedule, focusing on improving access to care through telehealth.