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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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.
If you would like to follow a particular clinical trial, you can use the Clinical Trial Finder or sign up to receive an email alert when results are posted.
Finding the clinical trial you or your child participated in online is not difficult, but you will have to be patient about getting the results. It can take researchers at least a year to analyze the data collected during the study, depending on how complex it was. Once the analysis is complete, researchers may take another year to publish the findings in a journal article, which would be listed in the U.S. National Library of Medicine's PubMed website.
Of course, the easiest way to find out the progress of your clinical trial is to talk to your research coordinator or your CF care doctor. If you or your child participated in an interventional trial, the study sponsor will provide information on who received the treatment and who received the placebo to your cystic fibrosis research team once the trial has been completed. Your research coordinator will be able to share the results with you.
You can track the clinical trial progress online by using the Clinical Trial Finder, where the status of the phases are regularly updated, or sign up for an email alert. You also can follow the trial on clinicaltrials.gov.
After a clinical trial is completed, the study sponsor must decide whether the results warrant further research. If not, the trial might end with your participation.
Although that particular treatment may not have succeeded, your participation will have given valuable information to researchers, who will be able to refocus their efforts on more promising therapies.
“I don't regret doing a clinical trial if the drug fails because it still helps us get closer to more effective therapies. We need to weed out the ones that aren't working and then focus on moving on to the ones that are. The only way to do that is for patients to participate in studies.”
-- Meranda Sue Honaker, an adult with CF, who has participated in 10 clinical trials
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