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.
As states and health systems prepare for potential surges in COVID-19 cases and increased demand for intensive care, many are creating policies to decide how they will prioritize services and equipment. The Cystic Fibrosis Foundation's position is clear: Any guideline that unfairly disadvantages people with CF due to outdated information and perceptions is unacceptable.
Many states and health systems are creating guidelines for frontline health care workers as they determine how to prioritize lifesaving services and equipment during a potential surge of COVID-19 cases. Alarmingly, several states have created regional triage guidance that reflect an outdated understanding of cystic fibrosis and run the risk of denying people with CF care without taking current clinical realities into account. Thanks to advances in treatment options and improvements in care, the median predicted age of a survival for people living with cystic fibrosis in the United States is approaching 50 years of age. With advances in therapies such as highly effective CFTR modulators, we expect that age will continue to climb until there is a cure.
While it is important to give frontline health care workers guidance during the crisis, the direction must be rooted in an accurate understanding of the patient's condition and prognosis, and ensure an individualized assessment based on their current manifestation. There is no evidence to suggest that people living with cystic fibrosis cannot make a full recovery from COVID-19.
The CF Foundation is educating policymakers and clinicians about how CF has changed. We recently published a letter to the editor in the American Journal of Respiratory and Critical Care Medicine that details intensive care considerations for people living with CF during the COVID-19 pandemic.
We are working closely with other patient organizations to execute a national strategy to help ensure these triage guidance documents do not unfairly disadvantage individuals with serious, chronic medical conditions. We believe all plans need to be rooted in the following principles:
Learn more about these guidance documents and actions the Foundation is taking from Mary Dwight, senior vice president and chief policy and advocacy officer.
We are also asking the community to take action and send messages to lawmakers explaining why the mere presence of cystic fibrosis should never disqualify someone from receiving lifesaving care.
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Cystic Fibrosis Foundation
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