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.
Chronic inflammation in people with cystic fibrosis causes damage to lung tissue that can eventually lead to respiratory failure. Researchers are trying to discover ways to dampen the exaggerated immune response that causes chronic inflammation without affecting the body's natural defenses against infection.
Inflammation is part of your body's immune system response to something harmful or irritating, such as germs or damaged cells. White blood cells, blood, and fluids rush to the affected site to destroy the irritant and flush it from the body, often causing swelling, redness, and heat in that area. In the lungs, an immune response causes swelling that narrows the airways and makes it harder to breathe. An increased cough is often a sign of inflammation.
When the lungs are infected with bacteria, white blood cells release enzymes, called proteases, to break down the structural proteins in bacteria and eliminate the threat. Once the infection is gone, other chemicals signal the white blood cells to stop the attack. However, in people with cystic fibrosis, these chemical signals often are not released or are not plentiful enough to reverse the inflammatory response and prevent the destruction of healthy lung tissue.
Repeated bouts of infection and inflammation gradually weaken the walls of the airways, causing them to widen, sag, and become scarred. This condition is called bronchiectasis, which can eventually lead to respiratory failure.
Although inflammation is typically triggered by an infection, recent studies in infants and toddlers with CF have shown evidence of inflammation in the lungs before any sign of infection is detected. This research suggests that people with CF have chronic inflammation, even between infections. For this reason, CF clinicians believe that early intervention is essential to prevent long-term damage.
Researchers are not sure why people with CF have chronic inflammation, but they have several hypotheses:
New treatments are being developed to modify or dampen the immune response of people with CF without compromising their ability to fight off infections.
Researchers are investigating different approaches to reduce the inflammatory response and boost the natural processes that help control inflammation. Deepika Polineni, M.D., MPH, assistant professor of Internal Medicine at the University of Kansas Medical Center and associate adult program director of the University of Kansas CF Care Center, discusses some of these strategies in this video.
Clinical trials are underway for several anti-inflammatory drugs for CF. These drugs aim to accomplish at least one of the following:
Clinicians can prescribe antibiotics such as azithromycin, which has anti-inflammatory effects. Steroids, such as prednisone, reduce inflammation but can't be used long-term because of side effects.
High doses of ibuprofen, a non-steroidal anti-inflammatory, have been shown to reduce inflammation in the lungs in people with CF over several years. However, CF doctors don't often prescribe ibuprofen because of side effects associated with high doses, such as kidney problems and ulcers.
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Drug Development Pipeline
We're attacking the disease from every angle. The Foundation is propelling every drug in our pipeline forward and will not stop until there is a cure.
About the Drug Development Pipeline
The Cystic Fibrosis Foundation facilitates the development of promising new drugs, and the drug development pipeline enables you to track the progress of these potential therapies.
How Drugs Get on the Pipeline
The Drug Development Pipeline features an extensive list of drugs that are in development or approved for treating cystic fibrosis. For a drug or program to be shown on the pipeline, it must meet certain conditions.
How an Experimental Drug Becomes an Approved Therapy
Ever wondered what it takes for a potential cystic fibrosis drug to become approved by the U.S. Food and Drug Administration? Here's an explanation of the four phases of clinical research.
Help us blaze a trail to better treatments and a cure for CF. Find a clinical trial that may be right for you.
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