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.
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As a parent of two young adults with cystic fibrosis, Peter knows the financial challenges and obstacles people with the disease face when trying to access quality, affordable care.
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.
I got into advocacy to work for the common good of all people with cystic fibrosis. Little did I know that this work would help me in a very personal way.
If you have cystic fibrosis like I do, then you know how important it is to protect our health care. That's why we must advocate for three key policy principles that are critical to allowing people with CF to access the high-quality, specialized care we need.
Austin Faught started advocating for those with cystic fibrosis in 2016 when his health insurer dropped his son's CF care team from its plan. He has found that advocacy gets easier with practice.
I didn't always think that Teen Advocacy Day could make a difference. Turns out I was wrong.
As Congress debates how to stabilize the health insurance marketplaces, several proposals would directly improve the ability of people with cystic fibrosis to access high quality, specialized care.
With several successes for the cystic fibrosis community over the past several months, advocacy is as important as ever to preserving our progress and working toward a cure.
I never realized how important it was to share my family's story of cystic fibrosis until I started participating in Teen Advocacy Day. This experience helped me find my voice.