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.
Responding to the Trump administration's recent decision to freeze risk adjustment payments, the Cystic Fibrosis Foundation joined 13 other nonpartisan patient groups to voice disappointment in the latest administrative efforts to undermine adequate and affordable health care for people with pre-existing conditions.
Published on July 16, 2018
A group of 14 patient and consumer groups issued the following statement regarding the Trump administration's announcement that it will freeze risk adjustment payments:
The administration's decision to withhold an estimated $10.4 billion in risk adjustment payments for 2017 from insurance companies is extremely disappointing. This critical program discourages insurers from cherry-picking healthy people and makes the market work for healthy and sick people alike. This is the latest move in a long list of measures taken by the administration to destabilize individual insurance markets and undermine the ability of people with pre-existing health conditions to enroll in affordable, comprehensive insurance coverage.
As a result of this action, premiums may rise, forcing families who struggle with chronic or serious illness to choose between their health and other financial commitments. This new financial burden could cause insurers to exit the insurance markets, leaving consumers with few -- if any -- choices to enroll in comprehensive coverage.
For months, the administration has repeatedly stated its commitment to protecting coverage for the millions of Americans with a pre-existing health condition. But its actions -- including this decision to withhold risk adjustment payments in addition to recent proposed and final rules that will expand access to subpar insurance products such as association health plans and short-term limited-duration insurance -- speak much louder than its words. As a result of these earlier actions, Congressional Budget Office (CBO) estimates that premiums will spike as much as 15 percent, causing millions of Americans to leave the Affordable Care Act (ACA) insurance market altogether.
We urge the administration to immediately resume payments. As always, our organizations stand ready to work with the administration and Congress on ways to lower costs while ensuring that people with pre-existing conditions have access to adequate, affordable, and accessible coverage that meets their medical needs.
American Heart Association
American Liver Foundation
American Lung Association
Crohn's & Colitis Foundation
Cystic Fibrosis Foundation
Hemophilia Federation of America
Lutheran Services in America
March of Dimes
National Alliance on Mental Illness
National Health Council
National MS Society
National Organization for Rare Disorders
National Patient Advocate Foundation
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