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.
President and CEO Michael Boyle shares an update on the Foundation's pledge to listen, learn, and take action against racism and discrimination.
Michael Boyle, M.D.
July 8, 2020
Being a CF Spouse During a Pandemic
Managing CF, Parenting, and Anxiety
One month ago, the CF Foundation pledged to listen, learn, and take action against racism and discrimination.
In the weeks since, we have spent time learning more about the experiences of Black colleagues in our organization and within the broader health care systems in which we operate. At the same time we have been reflecting on steps we can take that will make a meaningful difference and contribute to positive, lasting change.
We have also looked at the data. The CF patient registry tells us that approximately five percent of people with CF identify as Black. We know that non-white people with CF are more likely to have rare mutations that cannot be treated with current modulators, a key indicator that they are at risk of worse health outcomes. One particularly timely fact is, similar to those without CF, early data suggest that COVID-19 disproportionately affects CF patients of color, making up 20 percent of known cases among people with CF.
Addressing racism and health inequities is important and must be woven into the fabric of who we are and how we progress our mission. Along with the steps we are taking internally at the CF Foundation, we are focusing on the following three areas where we believe can make a difference within the community we serve.
As we continue to develop our plan and turn these ideas into action, we want to hear from the CF community. More information about how to get involved will be available in the coming weeks, and we encourage you to continue sharing your ideas and experiences with us by contacting email@example.com. We will provide updates as we begin to make progress and will continue to acknowledge where we can do better.
The issues we are seeking to address will not be solved overnight. However, our work with the CF community has taught us the power of collaboration, determination, and perseverance to bring about change. We will take inspiration from these lessons as we work together to navigate the road ahead.
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. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site 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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