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.
There was a clear message in today's second plenary at NACFC: no matter what role you play -- physician, scientist, person living with CF, parent, fundraiser, regulator -- it is going to take a tremendous team effort to advance new therapies as fast as possible and eventually find a cure for CF.
Michael Boyle, M.D.
October 28, 2016
The Patient Registry: Where We’ve Been, Where We’re Going
On the Road to a Cure: Pushing for Treatments for Everyone With CF
When we talk about the first man to walk on the moon, we immediately think of Neil Armstrong. But he was just one person among thousands who made that first step possible. In this year's second plenary the speakers talked about the CF community's efforts to “reach the moon.” And, like the Apollo 11 mission, it will not be one or even a few individuals but a collective group of thousands of dedicated people who enable us to bring transformative CF therapies forward and one day have a cure for every person with CF.
The importance of everyone working together toward a common purpose, and the role clinical trials will play in achieving this goal, was underscored today throughout the plenary, entitled Clinical Research: A Worldwide CF Community Effort.
The first speaker, Dr. Patrick Flume, professor of medicine and pediatrics at the Medical University of South Carolina, encouraged us to shoot for the moon -- a goal that seems far away but, with new scientific advances, is getting closer than ever. How close was highlighted by his descriptions of the promising, novel therapies currently in the pipeline, including ones that treat the underlying cause of CF.
Whereas the currently approved CFTR modulators benefit over 50 percent of the CF population, new modulators about to start clinical trials have potential not only to benefit more people than ever before, but also to be significantly more effective. It is the increased effectiveness of these drugs that may enable them to treat people with CF who have a single F508del mutation, which would dramatically increase the number of people with CF who could benefit from modulators. Some 86% of people with CF have either one or two F508del mutations.
Dr. Flume also profiled new potential therapies currently in clinical trials that could be used to complement CFTR modulators. Because of the continued importance of developing these new symptomatic treatments, researchers are conducting more clinical trials than ever before and are exploring the effectiveness of potential drugs for everything from anti-inflammatories and antibiotics to medicines that very efficiently break down mucus.
However, as exciting as it to have the most clinical trials for CF underway ever, enrollment is a serious challenge, Dr. Flume said. With only 33,000 people with CF in the United States, it is difficult to recruit enough people who meet all the eligibility criteria for a trial.
Discussing the importance of patients, Dr. Flume said, “We owe a tremendous gratitude to all of those persons who have participated in clinical trials.”
In an effort to expand the pool of people who can enroll in trials and accelerate drug development, the CF Foundation is also focusing on helping the performance of clinical trials in the United Kingdom, Europe and Australia. These countries have diverse concentrations of people with specific CF mutations, making it easier to find people who are eligible for certain trials, said Kris De Boeck, M.D., Ph.D., director of the Pediatric Pulmonary and Infectious Diseases program at the University of Leuven in Belgium and the second speaker at today's plenary. The European Cystic Fibrosis Society region alone represents people with 1,300 different CF mutations.
“We need global participation to advance as fast as possible,” Dr. De Boeck told the audience.
Worldwide collaboration by the entire CF community is essential to the effort to develop better treatments faster, she said. Currently, there are clinical trials at 43 sites in 15 countries within the European Cystic Fibrosis Society's clinical trials network. De Boeck said the Society plans to use funding from the CF Foundation to recruit more research coordinators and boost enrollment in clinical trials. This year, the CF Foundation also helped fund the Cystic Fibrosis Trust's Clinical Trial Accelerator Platform, which will help research sites hire staff and increase enrollment in clinical trials in the United Kingdom.
Finally, in the high point of the session, the audience also heard a powerful panel discussion moderated by Patricia Burks, M.A., R.N., C.C.R.C., Director of Clinical Trial Affairs at the CF Foundation, about the importance of clinical trials from members of the CF community via live video link. The speakers included Kristin Dunn and Brandon Erhart, two people with CF who have participated in clinical trials, and Elizabeth Bishop, the mother of 11-year-old twins with CF. The speakers particularly focused on why they think it is important that everyone with CF has the opportunity to participate in clinical trials.
Elizabeth, whose twins have participated in multiple clinical trials, explained that when two of her children were diagnosed with CF she initially felt helpless -- how do you fight something you cannot see? She then explained how clinical trials give their family the chance to do just that, an opportunity to do something about their disease, an opportunity to have some power.
Explaining how her twins feel about clinical trials, Elizabeth said, “Participating in the trials has given them some power back. My twins don't want to see another child go through what they have gone through. It gives them a way to do something about their illness and empower them.”
The panel also emphasized the impact that clinical trials have on the lives of the CF community by bringing hope. They empower CF community members to make decisions and, as Brandon explained, to go ahead and invest in the future. Kristin, who traveled the world as a financial analyst before having to leave her job because of her health, explained how clinical trials give her the hope that she will one day return to the workforce.
Talking about how they now have to plan for adulthood, Brandon said, “There is now this idea of being an adult. Who thought having a mortgage could be so exciting!”
Today's speakers captured perfectly the critical importance of everyone coming together to focus on our common goal. I certainly came away inspired! It will only be through the entire CF community's collective efforts that we will one day reach the moon and conquer this disease -- and the moon is getting closer every day!
To find out more about clinical trials near you as well as eligibility, please visit the CF Foundation's
Clinical Trial Finder.
Michael Boyle, M.D.
President and CEO, Cystic Fibrosis Foundation
Michael Boyle, M.D. is President and Chief Executive Officer. Prior to his appointment as President and CEO, Dr. Boyle served as Senior Vice President, Therapeutics Development at the Cystic Fibrosis Foundation from 2015-2019. In that role, Dr. Boyle shaped the Foundation’s clinical research strategy, overseeing the clinical development programs of new treatments for the CF Foundation, as well as the Foundation's Therapeutic Development Network of 92 academic research centers.
Dr. Boyle is internationally known for his clinical research and for his work to improve care for adults with CF. He served as both as an investigator in the clinical study of Kalydeco and principal investigator of the pivotal trial that led to approval of the first combination treatment, Orkambi. Dr. Boyle completed his medical training at Johns Hopkins, including a fellowship in pulmonary and critical care medicine, before joining the medical faculty in 1999. Dr. Boyle founded the Johns Hopkins Adult CF Program -- one of the largest in the United States -- in 1999 and served as director of that center for close to two decades. Today, he is an adjunct professor of medicine at Johns Hopkins, where he continues to see patients. In addition to his medical background, Dr. Boyle has completed training in non-profit management at both Johns Hopkins and Harvard.
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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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