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 U.S. House of Representatives passed its next relief package to provide additional protections for Americans during the COVID-19 pandemic. The Cystic Fibrosis Foundation applauds several provisions included in this bill and urges the Senate to pass these provisions swiftly to ensure the CF community can take full advantage as soon as possible.
On May 15, 2020 the U.S. House of Representatives passed the HEROES Act to serve as draft legislation to jumpstart discussions around the fourth major federal relief package in response to the COVID-19 pandemic. The Cystic Fibrosis Foundation applauds several provisions included in the legislation, including the expansion of paid leave for high-risk individuals and working family members, increasing federal funding for Medicaid, and expanding access to health coverage.
The HEROES Act is an important next step as Congress looks for ways to provide protection and relief due to the COVID-19 pandemic. Important provisions -- such as extending paid leave and increased Medicaid funding -- are critical for people with cystic fibrosis to help navigate these unprecedented times. As the Senate begins to review and negotiate the next major legislative package, we strongly urge them to swiftly pass legislation with these provisions intact.
As the COVID-19 pandemic continues to spread, millions of Americans, including those living with cystic fibrosis, are facing a devastating decision: place their health or their loved one's health at risk by going to work, or possibly lose their income altogether. Current family and medical leave policies do not go far enough to protect those most vulnerable to the pandemic. We must ensure that the eligibility for the paid Family and Medical Leave program is expanded to include individuals at high risk for adverse complications from COVID-19 and working members of their households.
In April, the CF community sent more than 17,000 messages to their members of Congress urging them to expand paid leave during the pandemic. Additionally, the Cystic Fibrosis Foundation sent a letter to congressional leaders signed by more than 160 patient and consumer organizations asking them to expand paid Family and Medical Leave for people with chronic conditions, such as cystic fibrosis, and working members of their households.
As a result, the HEROES Act includes expanded paid leave for people at high-risk of the adverse effects of COVID-19 or their loved ones. Affected individuals would not have to take accrued sick or vacation time before using their afforded paid leave. The bill proposes that this apply to any employer larger than one person and would be in effect through December 2021.
On May 21, the CF Foundation hosted our first-ever virtual Congressional Briefing to educate staff on Capitol Hill on the importance of expanded paid Family and Medical Leave for vulnerable populations. Panelists included:
Watch a recording of the briefing here.
"This situation has hit me particularly hard because Trikafta has recently given me my life back. In fact, a life I never thought I'd have. But being in the best of health in my life as an adult but having to be concerned about how my disability effects my employment isn't something I should have to be concerned with during a global pandemic." -- Katie Fielding, adult with CF
Medicaid is a crucial source of health coverage for approximately one-third of adults and one-half of children in the U.S. living with cystic fibrosis. Without comprehensive, affordable health insurance, people with CF are more likely to have interruptions and delays in treatment and care, which can have serious short-term and long-term impacts on overall health.
Unfortunately, state Medicaid budgets are now under threat. Medicaid enrollment is surging as people across the country lose access to employer-based coverage and, simultaneously, state budgets are under immense strain as revenues plummet and states grapple with the additional costs related to COVID-19. As a result, it is critical that the federal government provide additional funding to states to stave off cuts to Medicaid, which could mean reduced benefits or access to providers for people with CF who rely on the program. Fortunately, the HEROES Act includes provisions that would provide additional funding to state Medicaid programs during the pandemic and the CF Foundation encourages Congress to enact these provisions into law.
Your voices have already made an impact. But, it is only the beginning. We are asking the CF community to reach out and thank their members of Congress for including these critical provisions in the HEROES Act and to pass them swiftly without hesitation.
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Cystic Fibrosis Foundation
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