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 people living with cystic fibrosis and their families face complicated issues related to getting the care they need. Cystic Fibrosis Foundation Compass makes sure that no one has to do it alone.
CF Foundation Compass is a service that helps people with CF and their families with navigating insurance options, connecting to legal information and experts, finding available financial resources, and tackling other life issues.
CF care team members are paramount in providing highly specialized care to people living with CF. CF Foundation Compass can help by serving as a strategic ally for care teams, so team members can focus on their patients’ care.
CF Foundation Compass can help you navigate insurance, financial, legal, and other issues you are facing. Use this online form to start your conversation with a Compass case manager today.
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.
According to social worker Kim Reno, removing critical health care protections in current law would be devastating for people with cystic fibrosis and their families.
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Kim Reno doesn't have cystic fibrosis, but she sees its effects on her patients and their families every day. As a social worker at the CF care center at ProMedica in Toledo, Ohio, she helps people manage their CF and tackle challenges related to living with a chronic disease.
Kim says that although she has seen dramatic improvements in treating the disease during her career, many families face financial ruin to access the treatments they need.
“I remember the days when people were meeting their lifetime coverage cap with just one procedure,” she says. “People were fearful. One transplant alone can prevent people from affording future care.”
While CF can be incredibly difficult to live with, Kim says some of the most heartbreaking stories she's heard from her patients are related to financial struggles and families having to pay overwhelming out-of-pocket expenses to access necessary treatment.
But instead of dwelling on this, Kim tries to focus her energy on reforming the health care system in a way that benefits everyone -- including the CF community. That's why she educates lawmakers at her state capital about CF and the needs of the rare disease community as a whole.
“Lawmakers often look at the dollar signs when considering coverage needs for small populations,” she says. “You can't put a price on somebody's life. Our patients can go to college and become productive members of society as long as they have the care they require.”
Kim fears how her patients would be impacted if critical protections in current law were removed -- like the provisions prohibiting insurance companies from denying coverage to people with pre-existing conditions and the ban on lifetime and annual coverage caps.
“My patients would be choosing between medication and food, clothing, or shelter,” she says. “It would be devastating.”
Learn more about the Foundation's work to help ensure that any changes to health care reflect the unique needs of the CF community.
Former Public Policy and Advocacy Communications Manager, Cystic Fibrosis Foundation
Paydon previously worked at the CF Foundation as a Public Policy and Advocacy Communications Manager. Prior to joining the Foundation, Paydon spent three years working for Enroll America -- a national non-profit dedicated to helping consumers understand
and navigate the Affordable Care Act -- most recently as National Communicators Program Director. A Wisconsin native, Paydon is a competitive homebrewer, a fair-to-middling banjo player and an avid bicyclist. If you're curious, his father named him
after Paden, who is a character in the movie “Silverado.” Follow @Paydon on Twitter.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It 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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