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.
An observation by surfers in Australia has led to a simple, inexpensive hypertonic saline therapy.
Published on January 18, 2006
This concentrated saltwater solution improves airway clearance for patients with cystic fibrosis (CF), according to research reported in the Jan. 19 issue of the New England Journal of Medicine.
The idea for the study, supported by the Cystic Fibrosis Foundation, began when the Australian surfers with CF told their doctors that their airways felt clearer after exposure to the salt spray. The medical team was aware of some evidence that in CF, salt is depleted from the liquid that lines the airways. The team thus hypothesized that sterile saltwater may be a useful therapy. They were right. Now CF patients worldwide may benefit from this “low tech” treatment.
CF is one of the most common fatal genetic diseases and causes a thick mucus to clog the lungs which leads to chronic infections and damage. Australian researchers at Royal Prince Alfred Hospital received funding from the Cystic Fibrosis Foundation to conduct the hypertonic saline trial. It was the largest CF clinical trial ever conducted in Australia.
“Our team was delighted with the outcome using this inexpensive therapy,” said Peter Bye, M.D., head of Cystic Fibrosis Service, Royal Prince Alfred Hospital, Sydney, Australia, and the project's principal investigator. He also noted, “The hypertonic saline therapy should be administered after a bronchodilator-a drug to open the airways. CF patients should consult with their doctors before using the saline solution. Patients should also continue all their current medications.”
Some 164 patients from 16 adult or pediatric hospitals in Australia participated in the double-blind, parallel-group trial. The hypertonic saline study was conducted between September 2000 and November 2003.
For the experimental treatments, patients were first given a bronchodilator. Then the volunteers were assigned randomly to inhale through a nebulizer either 4 ml of 7 percent hypertonic saline (experimental) or 0.9 percent saline (control), twice daily for 48 weeks. A nebulizer is a medical device that delivers liquid medication in the form of a mist to the airways.
Researchers found that study participants who were given hypertonic saline had fewer pulmonary “flare-ups” than volunteers who were not given the solution. When pulmonary flare-ups did occur, those volunteers who were taking hypertonic saline tended to recover more swiftly than the other volunteers.
“This innovative new therapy is just one of the many novel CF treatments we have in our drug discovery and development pipeline,” said Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation. He added, “When researchers proposed this study to us, we were eager to provide support to evaluate the treatment as safe and effective, then get it quickly to CF patients.”
In addition to the U.S. Cystic Fibrosis Foundation, this study was supported by the National Health and Medical Research Council of Australia and the Australian Cystic Fibrosis Research Trust.
The Cystic Fibrosis Foundation, headquartered in Bethesda, Md., is a donor-supported, nonprofit organization committed to finding therapies and ultimately a cure for CF, and to improving the lives of those with the disease. CF is a life-threatening, genetic disease that can lead to fatal lung infections and digestive problems.
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