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.
Published on July 13, 2015
Two weeks ago, the approval of OrkambiTM was one of the happiest days of my life. It was an important milestone in a personal journey that began 39 years ago when I first met a very impressive group of CF families while I was still working at NIH. At that time, there was little hope for children with cystic fibrosis. Those parents I met so long ago were desperately searching for a miracle to save their children. I was moved by their passion and commitment, and their mission became mine. Ever since, the quest for the CF cure has been a driving force in my life.
The approvals of KalydecoTM and Orkambi have been among the most significant milestones in the journey toward a permanent cure. Through the years, we have been able to celebrate some key victories. When I first met those families, the median life expectancy for children with CF was less than 18 years of age. Today, the average survival is more than 40 years and, for the first time, more than 50 percent of the CF population is older than 18. Impressive progress! I feel lucky to have participated in advancing what will be one of the most important stories in 21st century medicine.
Looking back, I feel fortunate to have worked side by side with talented and passionate colleagues in Bethesda and in chapters throughout the country. I also have truly appreciated the support of many dedicated members of our wider CF community who share our vision of curing CF.
While I plan to continue to contribute to the Foundation's efforts, I am stepping down as president and CEO of the Foundation effective no later than December 31, 2015. My friend and colleague Preston W. Campbell, III, M.D., executive vice president of medical affairs, will become the next president and CEO at that time. We will work to create a smooth transition and make sure the momentum we all feel today will continue into the future.
I will be forever grateful for how deeply you have touched my life. I give thanks to each of you for the important role you have played in this miraculous journey so far.
Robert J. Beall, Ph.D.
President and CEO
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