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 joined 72 chronic and rare disease organizations to send a letter to President-elect Trump and Congressional leadership.
Published on December 15, 2016
The letter explains the critical role that high-quality and affordable health insurance plays in helping our communities access essential treatments and care, and expresses our desire to work together to create a health care system that benefits all Americans.
“Our goal is to ensure that people with CF have the coverage they require to access the treatments they need, and that the incoming administration and Congress understand the unique needs of our community as they advance new health care policies. We look forward to working together to improve the care that our community receives and the system they use to access it,” Preston W. Campbell III, M.D., president and CEO of the Foundation.
This effort is consistent with the Foundation's ongoing work to promote policies to help ensure that everyone living with CF has access to high-quality, specialized care and adequate, affordable health insurance regardless of income, employment, health status or geographic location. For more information, read more about our
governing policy principles, read the full text of the letter below, and view the
complete list of organizations that signed on.
December 14, 2016
Dear President-elect Trump:
The next four years present an opportunity to build a health policy agenda for all Americans. We write on behalf of the millions of Americans living with chronic, serious and life-threatening diseases who need access to affordable health insurance and quality health care.
The individuals we represent have daily health care demands that can span the course of a lifetime. Every day, this population grapples with managing their health needs while navigating complex insurance plans within a fragmented delivery system.
Americans who rely heavily on the health care system must be assured of adequate and affordable insurance that covers their health care needs. The high cost of care and inadequate insurance has led many to skip or delay care. They deserve a health care system that will help enable them to lead longer, healthier lives.
Policies that expand access to coverage, such as those that prevent preexisting condition exclusions and allow young people to remain on their parents' plans until age 26, are critically important to this population. These policies alone, however, are not enough to ensure meaningful access to health care.
We look forward to working with you and your Administration to ensure that the needs of the patients we represent are fully considered as the health insurance and health care systems are reevaluated.
CC: Senate Majority Leader Mitch McConnell
Incoming Senate Minority Leader Charles E. Schumer
Speaker of the House Paul D. Ryan
House Majority Leader Kevin McCarthy
House Minority Leader Nancy Pelosi
Share this Page
Follow Us On
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails