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.
The Cystic Fibrosis Registry Global Harmonization Group, including the Cystic Fibrosis Foundation, published findings from the first global study on the impact of COVID-19 on children with cystic fibrosis in the Journal of Cystic Fibrosis.
Published on December 9, 2020
BETHESDA, Md. -- Today, the Cystic Fibrosis Registry Global Harmonization Group, including the Cystic Fibrosis Foundation, published findings from the first global study on the impact of COVID-19 on children with cystic fibrosis. The data, published in the Journal of Cystic Fibrosis, are part of an international consortium to better understand the clinical experience and outcomes associated with the novel coronavirus among people with CF. The manuscript reports on 105 children under the age of 18 with cystic fibrosis from 13 countries between Feb. 1 and Aug. 7, 2020.
The study concludes that COVID-19 is usually associated with mild illness in children without severe pre-existing lung disease, offering a significantly more reassuring outlook than originally anticipated at the start of the global pandemic.
“We are highly encouraged by these findings on the impact of COVID-19 in children with CF,” said Bruce Marshall, MD, chief medical officer of the Cystic Fibrosis Foundation and an author of the paper. “However, further studies are needed to fully understand the impacts of this novel disease. We continue to urge all people living with CF to continue to take precautions to avoid exposure to COVID-19 and to work directly with their care teams to assess their personal risk during this time.”
The majority of the cases in the study experienced relatively mild illness when diagnosed with COVID-19. The most common symptoms across the cohort were fever and altered cough. Approximately 70 percent of the cases were managed in the community, and of the 24 cases admitted to the hospital, just six required supplemental oxygen during their admission and two received non-invasive ventilation. Individuals with lower baseline lung function and body mass index were more likely to be hospitalized. At the time of data collection, two children were in a recovery phase with all others having made a full recovery. No deaths were attributed to COVID-19.
Our Commitment to COVID-19 Research
The CF Foundation is monitoring COVID-19 cases in the U.S. through the Cystic Fibrosis Foundation Patient Registry, which gathers data from a network of 133 care centers across the country and includes more than 30,000 people with CF -- nearly the entire population of people with CF in the U.S. As of Dec. 3, 2020, the CF Foundation Registry reported a total 500 confirmed COVID-19 positive cases in the U.S. Of the positive cases in the U.S., three deaths have been reported in adults -- one in an individual with advanced lung disease and two in individuals who were post-transplant. The CF Foundation continues to recommend that people with CF and those close to them continue taking precautions to protect their health and follow the CDC's guidance for those at higher risk of developing severe illness.
Additional studies resulting from the Cystic Fibrosis Registry Global Harmonization Group related to outcomes in CF and COVID-19 -- published in the April and November 2020 editions of the Journal of Cystic Fibrosis -- suggested that for most people with cystic fibrosis, outcomes are less severe than originally anticipated at the start of the global pandemic.
About the Study
The paper, Clinical characteristics of SARS-CoV-2 infection in children with cystic fibrosis: international observational study, includes cases from 13 countries: Argentina, Brazil, Chile, France, Germany, Italy, Russia, South Africa, Spain, Sweden, Switzerland, the United Kingdom, and the United States of America. The full manuscript is available online.
The Cystic Fibrosis Foundation is the world's leader in the search for a cure for cystic fibrosis. The Foundation funds more CF research than any other organization, and nearly every CF drug available today was made possible because of Foundation support. Based in Bethesda, Md., the Foundation also supports and accredits a national care center network that has been recognized by the National Institutes of Health as a model of care for a chronic disease. The CF Foundation is a donor-supported nonprofit organization. For more information, visit cff.org.
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