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.
The award -- the highest scientific honor awarded by the Cystic Fibrosis Foundation -- recognizes those who have made significant contributions to our scientific understanding of CF.
The award was created to honor Dr. Paul di Sant’Agnese, a pioneering researcher and clinician whose legacy will be forever linked to his advancements in cystic fibrosis research.
Dr. di Sant’Agnese began his career at Columbia-Presbyterian Medical School as a young pediatric pathologist caring for children with a newly recognized disease called “Cystic Fibrosis of the Pancreas.” At that time, little was known about the disease
beyond the lack of pancreatic enzymes, and his early research provided insight into the effects of the disease on the lungs. In 1946, he reported the first use of an inhaled antibiotic (penicillin) to treat children with CF.
Two years later during a heat wave in New York City, he observed that infants on the CF ward were suffering from heatstroke and dehydration. Over the next five years, he demonstrated that people with CF have elevated salt in their sweat. This finding
not only paved the way for the sweat test, which we still use more than 60 years later, but also contributed to the discovery of the underlying chloride transport defect, CF genetic
variants and ultimately, the CFTR gene itself.
Dr. di Sant’Agnese served the medical and CF community throughout his five-decades long career. Among his many contributions, he launched one of the first CF centers in the United States, helped found the Cystic Fibrosis Foundation, and established the
Pediatric Metabolism Branch at the National Institutes of Health, where he mentored physicians and trainees -- many of whom went on to become leading CF scientists.
The 2017 Paul di Sant’Agnese Distinguished
Scientific Achievement Award was presented to Philip J. Thomas, Ph.D., a professor in the department of physiology at the University of Texas Southwestern Medical Center in Dallas, and Gergely L. Lukacs, M.D., Ph.D., a professor in the department
of physiology at McGill University in Montreal. The scientists were recognized for using genetic tools to validate the “two-hit” hypothesis that fixing two distinct defects in the cystic
fibrosis transmembrane conductance regulator (CFTR) protein by separate means would improve its trafficking and function. This work helped to set the stage for the development of second-generation
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