I’ve learned over the years to speak up and ask questions when it comes to my cystic fibrosis care.
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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.
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.
Pregnant women with cystic fibrosis will need to be more closely monitored than the average pregnant woman. Learn how you can partner with your CF care team and obstetric team to effectively manage your pregnancy.
I dreaded transitioning from my pediatric care center to my adult care center. I was stubborn and knew that I did not want to go. I thought I knew best, that is, until one phone call changed my entire perspective.
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.
Living with cystic fibrosis means you have to handle complicated logistics, like filling prescriptions, working with insurance companies, and scheduling appointments. Taking over these responsibilities from my mom was an adjustment, but I came up with a few tips to make the process much easier for me.
Many people with cystic fibrosis experience hemoptysis. Although that can be serious and is often frightening, most often it's not as serious as you might think. Let me set the record straight.
Although packing up and moving to college is not easy for anyone, it becomes more complicated for a person living with cystic fibrosis. Not only do we have to adjust to the unfamiliar ways of college life and be entirely in charge of our health, but the group of people we trust with our life changes as well.