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Cystic Fibrosis In America: What's That?

Thank you for your interest in the Cystic Fibrosis In America survey. The survey is now closed and results will be shared soon.

We know that cystic fibrosis is more than a lung disease. It affects the whole body - gastrointestinal system, sinuses, pancreas, liver, bones, and more. For many, CF is also so much more than physical. It influences our minds, work, hobbies, and relationships.

How can a survey help?

The Cystic Fibrosis In America survey is an annual survey on that seeks to help you get the information that you need. And we're not just talking about symptom management, but also fulfilling the informational and support needs those living with cystic fibrosis may have on their everyday lives. The survey covers “basics” like diagnosis and treatment experiences, but also dives into the nitty-gritty, like the emotional impact and the day-to-day challenges.

Each person that takes the Cystic Fibrosis In America survey contributes to a better understanding of CF and can help others who are going through it feel less alone. Sharing experiences in the survey can reveal how similar each person’s CF journey is, as well as the differences that make each journey unique.

What Will the Survey Ask Me?
The survey will ask about diagnosis, symptoms, symptom management, quality of life and relationships, healthcare professional engagement, and treatment awareness and experience. We do not require your name, address, or other personal information.

Please note that you do not have to take the survey all at once. Feel free to bookmark the survey in your Internet browser and return when you are able. You will resume where you left off.

How Do We Use the In America Survey Data?
Survey responses help us and our partners better understand the CF community. All survey responses are kept confidential, reported only in total (your specific responses will not be reported individually), and will become property of Health Union, LLC.

What happens after I take the survey?

After the Cystic Fibrosis In America survey closes each year, the Editorial Team at takes your responses and creates an infographic filled with information about living with CF.

But that’s not all – over the year, we publish articles based on learnings from the survey. Each article published using responses from the survey contributes to the information available to those affected by cystic fibrosis and helps them connect with those who have walked the same path.

One voice may seem like it won’t make a difference but, together, we can change how others perceive life with CF and bring comfort to others coping with their diagnosis.

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