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.
When I first learned that my two sons had cystic fibrosis nearly 20 years ago, I barely understood the disease, let alone how to fight back. After contacting the Foundation, I learned just how easy it was to make my voice heard through volunteering.
March 21, 2019
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The Volunteer Leadership Conference (VLC) is right around the corner and it's one of my most favorite weekends of the year! It is the one time all year long that I get to be surrounded by like-minded people -- people who know exactly what it's like to live with cystic fibrosis and who also have a fire in their bellies, who support each other, and who will help us eventually find a cure for CF. It took time to get here, though.
In 2002, my son Gavin was diagnosed with CF at the age of 2 1/2. Like so many others, I had no idea what that even meant. As I learned more about the disease, I knew that I had to step outside of my comfort zone and figure out a way to make some kind of impact. Back then, the life expectancy for people living with CF was 32. I was even more determined to make an impact when I learned that my second child, Jake, who I was 6 months pregnant with, also had CF.
Shortly after, I recovered from the shock of our dual diagnoses, and reached out to the CF Foundation to learn about ways I could fight back against CF. I soon discovered I could use my voice not only to raise awareness about a disease I once knew nothing about, but also to fundraise and help us get closer toward a cure.
If you're brand new to volunteering like I was many years ago, I recommend starting with these steps:
Join the conversation on Facebook.
Mother of children with CF
Pam Baker, mother of 4, has been fiercely fighting cystic fibrosis since her two oldest children were diagnosed with CF in 2002. She is a public speaker, advocate, team leader, and fundraiser with a specialty in passion fundraising -- turning what you love into a fundraising machine. As one of the top fundraising families year after year, her team, the Baker Boys’ Battalion, has raised over $4,000,000 for the CF Foundation. She will not stop fighting this disease until a cure is found for all people with cystic fibrosis.
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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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