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.
Last year -- just one week before my 12th birthday -- my doctor reached out to my family and asked me if I wanted to enroll in a clinical trial. Here's why I decided to say yes.
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Cystic fibrosis is something that is a part of me, but it does not -- and never will -- define me. I am not CF. CF is not me. But it is, however, there. I wake up during the night from coughing. I take an hour each day to do my vest and breathing treatments. I go to study visits, get blood drawn and have electrocardiograms.
This is my reality. I have CF.
A week before my 12th birthday, for example, the window to enroll in a certain clinical trial was closing. My doctor reached out to my family and asked if I wanted to be in the study. He wanted me to do it, but you had to be age 12 or older to enroll.
After some thought, I decided that I wanted to do the clinical trial. I wanted to know that I was helping other people with CF. I wanted to know that I could be making a difference. My family, friends and doctors encouraged it, as they wanted me to test a drug that could possibly help me and others. I felt a little nervous and scared -- afraid that there would be side effects or the drug would cause something bad to happen to me.
But on my 12th birthday, I found myself at the hospital giving blood and doing all of the other tests that were required to enroll in the study.
I did a pulmonary function test, and there were a bunch of blood draws (although there was only supposed to be one). They tried six times before it finally worked, and they got all the blood that was needed.
Next, I did a sweat test. I had done a sweat test before, but this time was different. I hadn't been allowed to eat and was worn out from the blood draws. I was stressed. Five of us were in a small room, and I was burning up.
I started to hyperventilate, and soon, I was having a full-blown panic attack.
After the panic attack, I finished the other medical tests and went home to wait for the results. We had no idea if I got into the clinical trial or not, and we also didn't know if I was going to be on the placebo or the actual drug. About a week later, we found out that I was accepted.
Being in the study wasn't as scary as I thought it would be. I actually enjoyed going to the study visits because they reminded me why I was doing it in the first place. Although it was hard not knowing if I was on the placebo or not, six months later I participated in the open-label extension study where I got to be on the actual drug.
I'm on the drug today, but soon the open-label extension will close. I'm going to miss being on this medicine. It was cool to be a part of something and to help other people like me.
That's the entire reason I did this study and why I didn't drop out. I did it simply so I could help push this drug through the process so other people could use it. I'm happy that I got to be a part of this clinical trial and will definitely consider doing more.
Teenager with CF
Kathryn is an eighth grader who was diagnosed with CF at the age of 3. She and her family have been involved with her local chapter’s Great Strides event for many years. Kathryn loves to read, dance and listen to music while swinging on the backyard swing set. At school, she writes for the yearbook and is in Winter Guard, and enjoys hanging out with her large group of friends. Kathryn writes poetry and is currently working on her first novel.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.
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