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 Foundation has joined 11 other patient groups in filing an amicus brief to challenge the short-term, limited-duration health insurance rule, which threatens access to adequate, affordable coverage for people with cystic fibrosis.
Published on October 8, 2018
Today, the CF Foundation joined 11 other patient groups to file an amicus curiae (or friend-of-the-court) brief in the U.S. District Court case, Association for Community Affiliated Plans v. United States, challenging the short-term health insurance rule.
The brief argues that short-term, limited-duration (STLD) plans erode protections for people with pre-existing conditions and divide the individual insurance market into plans for healthy people and plans for sick people, driving up costs for those who need comprehensive insurance. See below for the full statement:
The rule threatens to split and weaken the individual insurance market, which has provided millions of previously uninsured people with access to quality coverage since the health care law went into effect. People with serious illnesses need comprehensive coverage, but short-term plans could force them to pay increasingly higher premiums or forego coverage altogether as insurers raise rates or leave the market entirely -- a common problem prior to 2014.
Increases in premiums and decreases in availability of comprehensive plans will fall particularly hard on those with significant medical needs. Because issuers of short-term plans are empowered to discriminate against those with pre-existing conditions, such individuals will remain reliant on their ability to secure Affordable Care Act (ACA)-compliant plans.
Moreover, many individuals with short-term, limited-duration insurance who become sick will be unable to afford the care needed to respond to a life-threatening diagnosis, and will be forced to delay treatment for the months it may take to secure adequate coverage. Without coverage when they need it most, people with serious illnesses could face serious financial hardship and potential bankruptcy paying for their care.
Well-documented research has shown uninsured and underinsured Americans with heart disease and stroke experience higher mortality rates, poorer blood pressure control, greater neurological impairments, and longer hospital stays after a stroke. Uninsured patients are less likely to be screened for cancer and more likely to be diagnosed with later stage disease, which is harder to survive and costlier to treat.
Because of the overwhelming risks to patients and the proven flaws with these plans, the groups urge the court to issue an injunction stopping the rule and preserving current limits on STLD plans.
American Cancer Society
American Cancer Society Cancer Action Network
American Heart Association
American Lung Association
Cystic Fibrosis Foundation
Global Healthy Living Foundation
Hemophilia Federation of America
Leukemia and Lymphoma Society
March of Dimes
National Coalition for Cancer Survivorship
National Multiple Sclerosis Society
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