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.
New Developments in Clinical Research
Interested in learning more about the latest clinical research into treatments for nonsense and rare mutations or cystic fibrosis complications? To find out what new, cutting-edge studies are addressing these issues, watch the following interviews with some of the leading researchers in these areas.
Bill Skach, MD, executive vice president and chief scientific officer at the Cystic Fibrosis Foundation, talks about potential approaches for treating people with CF who have rare and nonsense mutations. These strategies include theratyping, small-molecule screening, and the use of transfer ribonucleic acid (RNA).
Bill Skach, MD, talks about developing genetic-based therapies that would work for all people with CF, regardless of their mutations. These therapies include messenger RNA therapy, DNA or gene therapy, and gene editing -- all of which are in early stages of development.
In this video, we hear from Alex Gifford, MD, FCCP, an associate professor of medicine and of the Dartmouth Institute, and the director of the adult CF program Dartmouth-Hitchcock Medical Center. He discusses ongoing clinical trials that study the effects of CFTR modulators on adults and children with CF and his hopes for the future of CFTR modulator therapy.
Terri Laguna, MD, the director of the cystic fibrosis center at Lurie Children's Hospital of Chicago, discusses two different approaches to tackling inflammation in CF, ongoing clinical trials for anti-inflammatory medications, and what she is most excited about for the future of CF.
Jennifer Taylor-Cousar, MD, MSCS, ATSF, who is co-director and CF Therapeutics Development Network (TDN) director of the adult cystic fibrosis program at National Jewish Health in Denver, discusses clinical research to improve treatment for cystic fibrosis infections. This research includes trials to determine the appropriate length of time to administer intravenous (IV) antibiotics during a pulmonary exacerbation as well as new approaches to treat drug-resistant bacteria.
Dave Nichols, MD, medical director of the TDN Coordinating Center at Seattle Children's Hospital, updates us on new developments in research on nontuberculous mycobacteria (NTM), which has become an increasing problem for people with CF. Dr. Nichols talks about how clinicians determine whether to treat people with CF who culture NTM, and what researchers are doing to better understand this bacteria to improve treatment.
Meghana N. Sathe, MD, associate professor of pediatrics and co-director of the pediatric CF center at the University of Texas Southwestern Medical Center/Children's Health, explains why people with CF can have problems with getting proper nutrition and experience gastrointestinal (GI) issues. She also discusses the GI Wellness study (now called the GALAXY study), which is being conducted by doctors from the Developing Innovative Gastroenterology Specialty Training program (DIGEST) to gauge which GI symptoms affect people with CF the most, so that researchers can prioritize them for further study.
Scott H. Donaldson, MD, associate professor of medicine and director of the adult CF center at the University of North Carolina, discusses why people with CF have trouble clearing mucus from their lungs and why this causes problems. He talks about what types of drugs are being developed to improve mucociliary clearance, the process of breaking down and moving mucus out of the lungs.
Follow Us On
Help us blaze a trail to better treatments and a cure for CF. Find a clinical trial that may be right for you.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails