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.
Why did so many people “take a breath for CF” last week? Uniting action and purpose catapults #TakeaBreathforCF, with some help from your favorite celebrities.
June 3, 2016
Why I Celebrate My Son’s CF Milestones
From Teen to Adult Advocate: Oakey Finds His Community and His Voice
You may have noticed a flurry of online activity last weekend in the cystic fibrosis community around the hashtag #TakeaBreathforCF. Singer-songwriter and musician Richard Marx (of pop fame in the '80s and '90s, so there's definitely some fandom happening in my corner) wanted to raise awareness about CF during May's CF Awareness Month with a social media campaign. He knew a simple concept and hashtag would be key for spreading the message on social, and #TakeaBreathforCF was born.
Oh boy, did it take off! After Richard posted the video of himself taking a breath, a wave of other celebrities joined in. Some of my favorites came from Arsenio Hall, Bob Saget, Olivia Newton-John and Blues Traveler. And everyone on the digital team at the Foundation was pumped to see Shania Twain, CeeLo Green and Jane Lynch posting videos as well.
But, the best part for me was watching the CF community get involved. You posted your own breath videos, and you asked your favorite celebrities and heroes to join in. You thanked the celebrities who had already posted and, without a doubt, brought the cause of curing CF even closer to their hearts.
I've been pondering why this campaign did so well. First, we had lots of great celebrities get on board and, of course, that helps a lot! Second, it was easy to participate: Take a breath and donate.
Finally, and most importantly, I think the concept of a single breath really resonated with everyone. For those of us with healthy lungs, a single deep breath just happens, followed by breath after automatic breath. But for people living with CF, a single breath can be a struggle, painful or nearly impossible -- a monumental effort. Asking people with healthy lungs and people with CF to all take a breath for CF unifies us in action, thought and purpose.
I am grateful for everyone -- famous or not -- who has taken a breath for CF. Let's keep this momentum going, because every breath brings more awareness to the fight against CF.
Online Community Events Lead, Cystic Fibrosis Foundation
Emily is the online community events lead at the CF Foundation. She comes to the Foundation after serving for three years as digital director at the Peace Corps. Emily has worked as a digital strategist for nonprofits, agencies and political campaigns, including three years with Organizing for America. In 2006, Emily earned a master's degree in cross-cultural journalism from the Missouri School of Journalism. She loves traveling, reading, exercising, cooking and eating well.
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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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