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 32nd North American Cystic Fibrosis Conference will be in Denver, Oct. 18-20. Pre-conference sessions will be held on Oct. 17.
The first two plenary sessions at this year's North American Cystic Fibrosis Conference (NACFC) will focus on infection, inflammation, and mucociliary clearance in the era of cystic fibrosis transmembrane conductance regulator (CFTR) modulators; the third will cover how to improve CF care through effective partnerships between people with CF, their families, and their clinical care teams.
Improving Outcomes of Infections in the Age of CFTR Modulators
Thursday, Oct. 18, 4:30-6 p.m.
Lisa Saiman M.D., M.P.H., will provide an update on research that seeks to understand microorganisms, including how they affect people with CF who are on CFTR modulators and people with CF who are not. Her presentation will include the detection, diagnosis, and treatment for these infections. She will also present current strategies that could give way to the development of future anti-infective treatments. Dr. Saiman is a professor of pediatrics at Columbia University Medical Center, and an attending physician and hospital epidemiologist at New York-Presbyterian Morgan Stanley Children's Hospital.
Anti-Inflammatories and Mucociliary Clearance Therapies in the Age of CFTR Modulators
Friday, Oct. 19, 9-10 a.m.
Felix Ratjen, M.D., Ph.D., will present the second plenary by reviewing the principles of inflammation and how CFTR dysfunction and restoration affect inflammation and mucociliary clearance in people with CF. Dr. Ratjen will also cover current treatment strategies to address inflammation and mucociliary clearance, as well as research into developing new strategies that could benefit all people with CF regardless of their type of mutations. Dr. Ratjen is the Sellers Chair in Cystic Fibrosis, head of the Division of Respiratory Medicine, and the program head of Translational Medicine at The Hospital for Sick Children in Toronto.
Partnering: The Oldest New Idea to Improve CF Care
Saturday, Oct. 19, 9-10 a.m.
As people with CF live longer, the partnerships they have with their care teams become increasingly important, requiring continued coordination and individualized care. Maren Batalden, M.D., M.P.H., will discuss the tensions underlying the shift away from a traditional, top-down approach toward a more collaborative partnership with people with CF, as well as the new strategies to support all people living with CF so they can better balance daily care with busy lives.
The plenary will include perspectives from Melanie Abdelnour, an adult living with CF; Kathryn Sabadosa, M.P.H., a parent of an adult child with CF; and Cynthia George, R.N., M.S.N., F.N.P., senior director of patient engagement at the CF Foundation. Dr. Batalden is an associate chief quality officer, associate director of graduate medical education for quality and safety, and director of medical management at the accountable care organization at the Cambridge Health Alliance in Cambridge, Mass.
Can't attend in person? Join us online for livestreamed sessions.
Livestream plenaries and select sessions
Thursday, Oct. 18 through Saturday, Oct. 20
See the latest on CF clinical care, research, and drug development as it is presented in real time. Registration for livestream is required.
As your partners in CF care, people with CF and their families can ask questions about what they heard at each livestreamed plenary. A Facebook Live question and answer session will be hosted by a member of the CF community with the plenary speakers. Details will be provided on the CF Foundation's social media channels, including Facebook.
Follow Us On
Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails