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.
A top priority for the next administration and Congress is health care reform. As an adult living with cystic fibrosis, I've been wondering what this will mean for me, our community and our ability to access high-quality, affordable care.
November 30, 2016
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We don't know yet how our health care might change, which leaves us with uncertainty -- a feeling our community knows all too well. We do, however, have something we can count on and that is the power of our collective voices. We are an incredibly strong group of individuals. Cystic fibrosis is insidious and yet we rise to the occasion every day to confront any challenge CF may bring. Rallying together for the good of the community is part of our DNA.
The CF Foundation was founded by a group of parents who wanted a better outcome for their children and all those with CF. As a community, we have followed their lead by coming together to advocate for our unique needs. We have raised millions of dollars that have allowed the Foundation to fund the science that has led to new treatments. We have joined together at chapter events across the country spreading a message of urgency and hope. This fall, hundreds of adults with CF came together at BreatheCon -- our first ever virtual conference for adults with CF. As a community, we have proven over and over that we are better together.
I have the honor of serving as a Trustee on the National Board of the Foundation. At our most recent board meeting, our first order of business was to talk about the possible changes in the health care landscape and what we can do as a Foundation to ensure that the needs of the CF community are heard loud and clear. Read more about that work here.
We have worked hand-in-hand for over 60 years to change the trajectory of this disease. I am grateful to all of you for how much we have accomplished together. And I have no doubt we are ready to represent the needs of our community to a new administration over the next four years.
Learn more about the Foundation's work to help ensure that any changes to health care reflect the unique needs of the CF community.
Adult with CF
KC is on the National Board of Trustees for the Cystic Fibrosis Foundation and is the chair of the CF Foundation Adult Advisory Council. She also is the team captain for the Friends of KC National Family Team, which has raised close to $250,000 for the CF Foundation since 2010. In the summer of 2001, KC threw out the first pitch at every Major League Baseball stadium to raise awareness and funds for the CF Foundation. KC lives in her hometown of Chagrin Falls, Ohio, with her husband, Justin, and their 10-year-old son, Mac. You can email her at firstname.lastname@example.org.
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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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