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.
At the 2016 North American Cystic Fibrosis Conference (NACFC) held on Oct. 27-29 in Orlando, Fla., the Cystic Fibrosis Foundation announced the recipients of seven awards given to members of the research and medical community whose achievements have helped advance cystic fibrosis research and care.
Published on November 8, 2016
Senior Vice President of Research Affairs at the CF Foundation, William Skach, M.D., presented the Paul di Sant'Agnese Distinguished Scientific Achievement Award to Raymond Frizzell, Ph.D., a professor and director of the Cystic Fibrosis Research Center at Children's Hospital of Pittsburgh. Dr. Frizzell made the seminal discovery that CF lung cells lacked chloride channels and was the first to propose -- and help prove -- that these channels were either missing or mutated in CF. During his 46-year medical career, Dr. Frizzell developed the first CF Research and Development Program (RDP) at the University of Alabama at Birmingham into one of the premier CF centers in the United States and started a second RDP in Pittsburgh, which has become a cornerstone of the CF research community.
President and CEO of the Cystic Fibrosis Foundation, Preston W. Campbell, III, M.D., presented the inaugural Carol and C. Richard Mattingly Leadership in Mental Health Care Award to Alexandra L. Quittner, Ph.D., a professor of psychology, pediatrics and otolaryngology at the University of Miami. Dr. Quittner is an internationally recognized expert on depression and anxiety in people with CF and their caregivers.
She led investigations on the first international study of symptoms of depression and anxiety in the CF population and co-chaired the committee that developed guidelines on screening and treating depression and anxiety in people with CF. Dr. Quittner also serves on the Mental Health Advisory Committee, which is focused on facilitating the implementation of the guidelines across the care center network.
Cindy George, senior director of Partnerships for Sustaining Daily Care at the CF Foundation, presented the third annual Mary M. Kontos Care Champion Award to Ginny Drapeau, BSN, RN, CCRP, CF clinical nurse and research coordinator at Connecticut Children's Medical Center and Karen Maguinness MS, RD, CSP, CF registered dietitian at Riley Hospital for Children at Indiana University Medical Center.
Since starting at her CF care center 23 years ago, Ginny Drapeau has made contributions at both the local and national levels, most notably leading work in the development of patient education materials and quality improvement. Karen Maguinness, the second award recipient, is a leading dietitian who has worked to improve nutritional outcomes for individuals with CF since 1985, serving nationally as a dietitian mentor and as a member of multiple CF Foundation committees. The Kontos Award is presented to non-physician members of a care team who have made significant contributions to the field of day-to-day care.
Senior Vice President of Clinical Affairs at the Foundation, Bruce C. Marshall, M.D., presented the Quality Care Awards to CF care centers that have demonstrated sustained commitment to quality improvement with tangible results. He also presented the Outstanding Partnership Awards to CF care centers that have gone the extra mile in partnering with their local CF chapter to support our shared mission; the Junior Investigator Award for Best Abstract in Clinical Research to Ruth Bernstein, M.S., from the University of Miami; and the Junior Investigator Award for Best Abstract in Basic Science to Megan Kiedrowski, Ph.D., from the University of Pittsburgh.
Congratulations to all of our 2016 award recipients. Visit the 2016
North American Cystic Fibrosis Conference page for videos and recaps from
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