Learn about cystic fibrosis, a genetic disorder that affects the lungs, pancreas, and other organs, and how to treat and live with this chronic disease.
CF is a rare genetic disease found in about 30,000 people in the U.S. If you have CF or are considering testing for it, knowing about the role of genetics in CF can help you make informed decisions about your health care.
If you or your child has just been diagnosed with cystic fibrosis, or your doctor has recommended testing for CF, you may have many questions.
Diagnosing CF is a multistep process. A complete diagnostic evaluation should include a newborn screening, a sweat chloride test, a genetic or carrier test, and a clinical evaluation at a CF Foundation-accredited care center.
Raising a child with cystic fibrosis can bring up many questions because CF affects many aspects of your child’s life. Here you’ll find resources to help you manage your child’s daily needs and find the best possible CF care.
Living with cystic fibrosis comes with many challenges, including medical, social, and financial. By learning more about how you can manage your disease every day, you can ultimately help find a balance between your busy lifestyle and your CF care.
People with CF are living longer, healthier lives than ever before. As an adult with CF, you may reach key milestones you might not have considered. Planning for these life events requires careful thought as you make decisions that may impact your life.
People with cystic fibrosis are living longer and more fulfilling lives, thanks in part to specialized CF care and a range of treatment options.
Cystic Fibrosis Foundation-accredited care centers provide expert care and specialized disease management to people living with cystic fibrosis.
We provide funding for and accredit more than 120 care centers and 53 affiliate programs nationwide. The high quality of specialized care available throughout the care center network has led to the improved length and quality of life for people with CF.
The Cystic Fibrosis Foundation provides standard care guidelines based on the latest research, medical evidence, and consultation with experts on best practices.
As a clinician, you’re critical in helping people with CF maintain their quality of life. We’re committed to helping you partner with patients and their families by providing resources you can use to improve and continue to provide high-quality care.
As part of the Cystic Fibrosis Foundation's mission to help improve the lives of people living with cystic fibrosis, the PSDC initiative taps the CF community to inform key efforts to support the management of daily care.
Your cystic fibrosis care team includes a group of CF health care professionals who partner with you to provide specialized, comprehensive CF care.
Many cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for CF and supports a broad range of research initiatives to tackle the disease from all angles.
The CF Foundation offers a number of resources for learning about clinical trials and treatments that are being developed to improve the treatment of cystic fibrosis.
Our understanding of CF continues to evolve as scientists study what causes the disease and how it affects the body. These insights drive the development of new and better treatments and bring us one step closer to a cure.
Researchers, supported by the CF Foundation, have made tremendous advances to improve the health and quality of life of people with CF. We are committed to providing the tools and resources you need to continuously build upon this work.
The Partnerships for Sustaining Daily Care (PSDC) team had the opportunity to hear from people with cystic fibrosis, families and care teams at five Family Education Days at care centers across the country. Here's what we heard.
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For many with cystic fibrosis, balancing life with daily CF treatments can be hard. Talking about it with your CF care team can also be tough, especially when you're afraid of letting others down or being judged for “non-adherence.”
This is why the Cystic Fibrosis Foundation brought together adults with CF, parents, researchers, and care team clinicians to promote helpful conversations between people with CF, their families, and care teams to better understand and address what it takes to sustain daily CF care. They call this effort Partnerships for Sustaining Daily Care (PSDC).
Recently, we were invited to present this work at five Family Education Days across the country. While visiting these care centers, we heard from adults with CF, families, and care teams about how they talk about sustaining daily CF care.
Here's some of what we heard:
So, what does this mean for our community?
What we heard added to our understanding and will be used to move this work forward. We will conduct research over the next several months to learn how conversations about daily treatment plans between care teams and people with CF and their families can be supported. We are also developing solutions that work in the real world through the Success with Therapies Research Consortium -- a need the community expressed at each of our visits.
Together, we will find the tools and resources necessary to support individuals with CF and their families in managing daily CF care. Our collective learning as a community is just beginning, and we hope you will join us by sharing your own stories and ideas. We're listening at PSDCteam@cff.org.
Senior Director of Partnerships for Sustaining Daily Care, Cystic Fibrosis Foundation
Prior to joining the CF Foundation, Cindy served as a family nurse practitioner and had the privilege of working with adults with CF. At the Foundation, Cindy's work is concentrated on promoting a more holistic approach to address the challenges of balancing CF treatments with everyday life. You can follow Cindy and her work @CynthiaGeorge15.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.
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