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.
A mother worries that her son may lose access to crucial cystic fibrosis medication if proposed health care reforms are carried out.
February 22, 2017
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Rebecca and Brock Schroeder's lives were turned upside down with the birth of their first child, Brady -- and not in the happy chaotic way new parents expect. Brady was diagnosed with cystic fibrosis at 2 weeks old.
“It was the darkest time of my life,” Rebecca says. “I didn't feel like I could trust my instincts on how to take care of my son. There are entire months where I can't recall anything at all. It was overwhelming.”
By age 4, Brady was in what Rebecca calls a “constant battle between surgeries and antibiotics,” and had already undergone two respiratory procedures.
“We used to hear every breath when he was asleep,” she says. “There's nothing worse than having a front row seat to your child's suffering.”
However, a new medication had just been approved to treat CF and after starting the treatment, Brady's health began to improve dramatically. He regained his sense of smell and his appetite, which made it easier for Rebecca and Brock to get Brady proper nutrition. And, for the first time in his life, Rebecca and Brock couldn't hear Brady breathing while he slept.
But Brady's new medication regimen brought new challenges. Although the family had quality health insurance through Brock's employer, the medication's price tag started to weigh on their minds. What if annual coverage caps limited their ability to get Brady the medication he needed? What if they reached a lifetime coverage cap that denied them access to the medication completely?
“I started thinking about what I would do if this life-saving miracle got taken away from us,” she says. “Being so dependent on something that is so expensive means that it's always in the back of your mind.”
Rebecca fears that at some point, Brady, who is 9 now, will struggle to get the medication that has improved his quality of life. She specifically points to laws that are critical to Brady's long-term health: those that prevent insurance companies from denying coverage due to a pre-existing condition and setting annual and lifetime coverage caps. She worries that new legislation could weaken these protections that Brady relies on to stay healthy.
“I just want everyone to be aware of the consequences of lack of access and coverage and the gory details of living with cystic fibrosis. Having CF is almost like having a part-time job. It requires a lot of work, but the CF community is full of fighters.”
Congress needs to hear from you about the vital role adequate, affordable health care coverage plays in helping people with CF live longer, healthier lives. Send your member of Congress a message and ask him or her to ensure that the care and coverage needs of people with CF are protected.
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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