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.
People with cystic fibrosis are prone to infections because of the thick, sticky mucus that clogs their airways. The Cystic Fibrosis Foundation is funding research to help fight these infections.
Infections are a problem for people with cystic fibrosis because they can cause fever, difficulty breathing, coughing, and excessive inflammation. A cycle of recurring infections and inflammation gradually destroys lung tissue.
People with CF are susceptible to infections from bacteria, viruses, and fungi because abnormally thick, sticky mucus traps these germs in the airways. They also are prone to infections because their mucus and airway liquid does not have the same infection-fighting properties as normal mucus. This abnormal mucus provides an ideal environment for bacteria to form protective layers -- known as biofilms -- that make them more difficult to kill.
Infections take a significant physical and mental toll on people with cystic fibrosis and remain a top concern. To make meaningful progress against this complex challenge, the Cystic Fibrosis Foundation has established the Infection Research Initiative to help improve the detection, diagnosis, prevention, and treatment of infections.
Long-term lung infections are a serious, ongoing threat to the lives of people with CF; therefore, the Foundation funds more research programs focused on infections than any other CF complication.
Scientists are researching how germs interact with each other -- including how they compete, how they cooperate, and how they affect the strength or degree of damage that other microorganisms can cause to the lungs. Studying these interactions helps researchers develop better strategies to manage and treat infections.
Jennifer Bomberger, PhD, an associate professor of medicine at the University of Pittsburgh, answers questions from the CF community, such as whether a less serious bacteria can prevent the dominance of a more dangerous bacteria.
A new area of research will explore how microorganisms, such as bacteria, respond to the changing environment in the lungs once people start taking cystic fibrosis transmembrane conductance regulator (CFTR) modulators and eventually other drugs that target the underlying defect of CF.
Difficult-to-treat infections are another area of focus for researchers. Because more people with CF are getting nontuberculous mycobacteria (NTM) infections, the Foundation has funded ongoing research to learn more about them. In the video below, David Nichols, M.D., an associate professor of pediatric pulmonology and medical director of the Cystic Fibrosis Therapeutics Development Network Coordinating Center in Seattle, discusses what NTM is, why it is difficult to treat, and the range of research that is being done to address the problem.
Work done by the Foundation-funded Colorado CF Research Development Program helps with clinical care and lays the groundwork for developing new treatments for infections. Researchers at National Jewish Health in Denver analyze the DNA of NTM samples from patients to help clinicians make treatment decisions. The research program also sends NTM samples to research laboratories and pharmaceutical companies to test potential treatments in the lab.
Two new studies -- PREDICT and PATIENCE -- aim to create standard ways to diagnose and treat NTM. The participating study sites with expertise in NTM have formed the NTM Consortium, which will be able to accelerate future NTM clinical studies.
The CF Foundation also has funded several programs to identify promising molecules that could be used to treat NTM by capitalizing on advances made by the Bill and Melinda Gates Foundation during its efforts to improve treatment for tuberculosis. (NTM is a bacterial cousin of the bacteria that causes tuberculosis.)
The Foundation is funding the development of a wide range of treatments to address infections. In addition, researchers are exploring when to treat, how long to treat, and what medications to use.
One study that will provide insight into the length of antibiotic treatment is the STOP 2 trial. To learn more about this study, watch the following video in which Jennifer L. Taylor-Cousar, M.D., an associate professor in the departments of Medicine and Pediatrics at National Jewish Health, explains why infections are a problem for people in CF, and what is being done to improve treatment.
To address drug-resistant bacteria, the Foundation is supporting clinical research into unique treatments, such as gallium and nitric oxide, that work differently than typical antibiotics.
To grow, bacteria rely on some processes that require iron. If gallium -- an atom nearly identical to iron -- is used instead, it can disrupt these processes. For example, gallium has been shown to kill antibiotic-resistant strains of Pseudomonas in laboratory research. Intravenous (IV) gallium is being tested in clinical trials in people with CF, and an inhaled version is in development.
Inhaled nitric oxide is being tested in clinical trials as a treatment for Pseudomonas and NTM. Nitric oxide is a molecule produced by our bodies that kills bacteria, breaks up biofilms, and improves the movement of cilia -- hair-like structures that help move mucus out of the lungs.
Other potential treatments that are being tested include:
The Foundation is investigating the development of up to three potential therapies that could prevent or reverse hearing loss from aminoglycosides. Two drugs would protect the inner ear from damage. One drug would activate cells in the inner ear to create new hair cells that are responsible for hearing.
The Foundation also is supporting research into fungal infections, especially those caused by Aspergillus fumigatus. This type of fungus can cause complications when it becomes invasive or when it causes an allergic reaction called allergic bronchopulmonary aspergillosis (ABPA). For the past three years, the Foundation has been a major sponsor of Advances Against Aspergillosis, an international conference focusing on new discoveries about this fungus and improving its diagnosis and treatment.
Gina Hong, MD, MPH, assistant professor of medicine at the University of Pennsylvania Medical Center, answers questions from the CF community about research into anti-fungal treatments.
In addition, the Foundation has provided funding to develop an inhaled version of itraconazole to treat ABPA. An inhaled version could have fewer side effects and drug-drug interactions than the high doses needed for oral itraconazole.
To learn more about key infection research priorities including NTM, Aspergillus, and phage therapy, watch the webinar, “Research Overview: Infections.” The webinar, hosted on Aug. 25, 2020, brought together research experts and members of the Infection Research Initiative Steering Committee to discuss the latest updates in infection research.
To learn more about current treatments for infections, visit Antibiotics.
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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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