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.
Daily CF treatments take time, patience and persistence. But the benefits of managing your treatment plan outweigh the drawbacks so that you can achieve more of your personal goals.
Although your care team will work with you to tailor your treatment plan, most treatment plans will include:
Every person with CF has a different treatment plan. Yours is unique to your specific health needs, age, lifestyle, goals and medical test results. Your care team will partner with you so you can maintain good health as long as possible and achieve your personal goals.
There is a lot you can do to successfully manage your health. With your input, your care team can work with you to develop your treatment plan. From there, you decide how to manage it every day. Successful management means developing a routine for taking your medications, clearing your airways, avoiding germs, eating a high-calorie diet and following a fitness plan. That puts you in control of your health.
Find your motivation. Achieving your personal goals -- such as going on a road trip, running a marathon, or just spending more time doing the things you enjoy with your friends and family -- can serve as a powerful reminder to help you stick to your daily treatment plan.
"I do my treatments for my kids. They get me fired up.”
- Andy Lipman, 41
"I do my treatments for my kids. They get me fired up.”
- Andy Lipman, 41
Discover how Dana Curry, 31, uses fun, motivational techniques to fit in all her daily treatments and therapies.
Small changes can make a big difference, so take it one step at a time. Follow your treatment plan consistently until it becomes part of your daily routine. You will likely feel more energetic. You may have fewer hospitalizations and exacerbations (worsening of your symptoms) and, in many cases, have better lung function - all of which can contribute to a longer and better life.
This is your treatment plan, so you can develop a schedule that works best for you. Managing your treatment plan requires you to be organized and committed in order to do it successfully. When creating your treatment routine, consider the following:
Experiment with different ways to manage your time or try different airway clearance techniques or medical equipment until you find a system that works for you. Nobody is perfect about his or her treatment plan. Don't get discouraged if you miss taking a medication or two. There may be days when you are too busy or don't have enough energy to complete your entire routine. This is where your care team can help you problem-solve, so talk to them about it.
Making your health a priority and finding creative ways to fit your treatments into your day will help you to successfully manage your CF so that you can reach your personal goals.
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Cystic Fibrosis Foundation
4550 Montgomery Ave.
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Bethesda, MD 20814
800-344-4823 (toll free)
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