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.
I'm a big proponent of participating in clinical research, but COVID-19 made me think twice about participating in a clinical trial that required six hospital visits. However, a screening visit reassured me that the researchers were taking all the necessary precautions.
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For the last seven years, I've been an active participant in clinical research for cystic fibrosis. It is something I'm incredibly passionate about. Ongoing research aims to cure CF, while
also improving current methods of treatment and enhancing the quality of life for those of us living with this disease. Having benefited from therapies that were developed and tested by those before me, participating in clinical research feels like
a small way I can pay it forward.
The benefits of participating in research are numerous. I get to see certain members of my CF care team more frequently. Having these additional visits has helped forge deeper connections and trust between my care
team and me. Study visits also make it possible to keep a vigilant eye on my health. I am always compensated for my time and effort. Also, I genuinely love science and research, so being able to take part in the advancement of those things makes me
When this pandemic began and all my health care appointments switched to a virtual platform, I immediately wondered what this would mean for research.
I wasn't enrolled in a clinical trial, but I knew that it would make future enrollments tricky. When, months later, my study coordinator reached out with an offer to begin a new trial, I was admittedly a little nervous.
The proposed study was a Phase 1 trial. In my experience, Phase 1 trials are generally short-term, but more complex and demanding than later phases. For this study, I'd need to be seen at my hospital a total of six times. I hadn't stepped foot into a
hospital for the better part of a year, so the idea was more than a little nerve-wracking.
Despite my initial uncertainty, I agreed to be seen for a screening visit. First, I needed to be tested for COVID-19. I did this at a local drive-through testing site. Once I arrived at the hospital, I immediately noticed some differences: There were
spaces marked on the ground encouraging people to keep their physical distance, hand-sanitizing stations set up throughout the entrance and lobby, and masked attendants at the doors inquiring about symptoms and giving instructions to each person who
I'd never seen the hospital so empty. Many chairs in the lobby had been removed, leaving considerable space between them. Everywhere I looked -- on the walls, in the elevator, and even in the bathroom stall -- there were signs reminding people to stay
masked and stand 6 feet apart.
My study coordinator met me in the lobby, and we walked directly to a room. There was no check-in process or time spent in waiting areas. During my appointment, I came into contact only with the necessary people: my study coordinator, a nurse, and my
doctor. Everyone was masked the entire time, and all three of them also wore eye protection.
I knew that I'd be doing pulmonary function tests (PFTs), but wasn't sure how that would work, because it is an aerosol-generating procedure that is considered higher risk for
transmission of COVID. My study coordinator was the only other person in the room at the time of testing. During the procedure, she wore a fitted N-95 mask, gown, and goggles. A giant, portable HEPA filter was brought into the room and was running
both during PFTs and for a significant amount of time afterward.
By the end of the appointment, I breathed a sigh of relief. After seeing all that was being done to keep both patients and staff safe, I no longer had any hesitations or concerns about how the rest of the study would go.
Before each appointment, I easily got tested for COVID and the same safety protocol was followed each time I was seen at the hospital.
Before my last scheduled visit, I developed a sinus infection. Since I was getting tested for COVID weekly, we had no reason to believe my symptoms were something more concerning. Even still, we canceled the appointment just to be safe. I was able to
drop a sputum sample off at a local lab (utilizing local labs has been unbelievably helpful during this pandemic), start treatment at home, and reschedule the appointment for a time when I was feeling better. My final appointment fell outside the
scheduled window, but it seems study sponsors are well aware of the fact that this pandemic has added a new layer of unpredictability to CF research.
My experience with research in the time of COVID has been a bit different, but it's still been great. I've come away with an even better appreciation for the tireless work of the medical and scientific communities. Even a global pandemic can't stop them!
Research is no less important now than it was before our world was turned upside down by a virus. It's comforting to know that so much is being done to protect everyone involved as we continue doing this important work together.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Jenny was tested and diagnosed at birth following the diagnosis of her two older sisters. Jenny is passionate about raising funds and awareness for cystic fibrosis, and she helped form the foundational Patient and Family Advisory Board at her CF center.
She was chosen as a recipient of the Vertex All in For CF Scholarship twice as she pursued a degree in psychology, which she earned in 2019. Jenny lives in central Utah with her daughter, fiancé, and an ever-growing zoo of animals. Jenny writes about
motherhood, living with cystic fibrosis, and more on her blog Lungs N' Roses and she can be found on Instagram.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site 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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