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.
In the third plenary, Dr. Wayne Morgan talked about the connection between cystic fibrosis care and the Patient Registry, and introduced a new way for people with CF, along with their families, to help shape the research conducted using the Registry.
Aliza Fink, D.Sc.
October 29, 2016
Turn Your Curiosity Into a CF Research Project
An Inspirational Message on the Worldwide CF Community Effort to Advance CF Therapies
Yogi Berra said, “You can observe a lot by just watching.” This inspired the title for the third plenary at the NACFC, “You Can Observe a Lot by Just Watching: Lessons from the CFF Patient Registry.” In it, Wayne Morgan, M.D., a pediatric pulmonologist at the University of Arizona in Tucson, reviewed the role of the
Patient Registry in improving our understanding of cystic fibrosis, the care of patients with CF and opportunities to improve care.
Since the 1960s, the CF Patient Registry has collected information about people with CF who receive care at CF Foundation-accredited
care centers and agree to participate in the Patient Registry. Over time, the Registry has collected a wide range of information about people with CF to show trends, including lung function, the types of
microorganisms they have and the
medications they have been prescribed. Some of the uses of the Registry are to study
CF treatments and outcomes and to design CF
clinical trials. Thanks to the Registry, we are able to watch what happens in CF care and apply that knowledge to continuously improve the quality of that care.
Dr. Morgan shared his unique perspective on how the Registry has helped shape our understanding of CF and clinical care. After recognizing the late
Dr. Warren Warwick, who started the Registry, Dr. Morgan outlined how it has grown and reflected on three main questions:
As an epidemiologist, I spend my days at the CF Foundation thinking about nuances and details of Registry data. It was so exciting to watch the plenary and reflect on the impact the Registry has had on our community. One thing that really struck me was how the Registry's continued success is such a group effort: this unparalleled resource exists only through the efforts of the entire community, people with CF and their families who agree to share their data, care team members, the people who enter data into the Registry, researchers and our team at the CF Foundation.
The realization that we need contributions from everyone involved, especially people with CF and their families, has led to a new initiative: the
Insight CF Registry Research Project. For the first time, people with CF and their families can have a direct impact on shaping research efforts using the Registry, and the first step is to invite them to send us their research questions. To learn more and submit research questions, visit
www.cff.org/InsightCF or email
Aliza Fink, D.Sc.
Director of Epidemiology, Cystic Fibrosis Foundation
Aliza is an epidemiologist who joined the CF Foundation in 2012 to develop and implement a research program that is based on the data in the CF Foundation Patient Registry. This is a great job for her because she loves using data to tell stories that help us understand the world around us.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.
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