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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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.
At the third plenary at this year's North American Cystic Fibrosis Conference, we explored what it means to partner in care and how to do it better.
October 20, 2018
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I think there's one thing all patients can agree on: No one likes feeling as though they're just a number. We are not cystic fibrosis. We are not our lab values. And treatments aren't the only things we want to do all day. We're human beings who have complex lives, lots to juggle, and priorities that may differ from what our care team members think they should be. Wouldn't it be great if our clinicians realized that?
Well, I've got great news! The Cystic Fibrosis Foundation is committed to this cause and has been working for years researching what helps build strong partnerships between CF patients and families and their care teams and what hinders them. It's important work and the magnitude of those partnerships was showcased at this year's North American Cystic Fibrosis Conference (NACFC) Plenary 3, Partnerships: The Oldest New Idea to Improve Outcomes.
The relationships between people with CF and their care teams are crucial to managing CF well. Research has shown that when clinicians and patients are full partners and acknowledge their shared humanity and respective expertise, outcomes improve. I was fortunate to participate in the discussion, sharing the perspective of a person with CF. The discussion also included Kathryn Sabadosa, mom to a young adult with CF; Cynthia George, senior director of patient engagement at the CF Foundation; and Maren Batalden, M.D., assistant professor at Harvard Medical School and associate chief quality officer at the Cambridge Health Alliance in Cambridge, Mass.
Dr. Batalden, an expert on the subject, shared how strengthening partnerships between people with CF and care teams ultimately improves patient outcomes, telling the audience, “Because the outcomes that really count ... have to do with living an unquantifiable full and meaningful life with cystic fibrosis ... only genuine partnership makes it possible for us to see beyond the numbers, beyond what's the matter with you to what matters to you.”
As I listened to the other panelists, there were moments when I was thinking “YES!” and moments when I had tears in my eyes because I was so touched that these people “get it.”
It's comforting to know there are clinicians and parents who see the value in seeing us as the human beings we are, to know that so many are working hard to make sure we have a seat at the table.
But that doesn't mean people with CF are off the hook here. Nope. If we want our clinicians to be better partners, we as patients and families have to hold up our end of the bargain by communicating what's important to us, sharing the goals that matter most to us, and being honest about what's not working.
It also helps to remember that under their gowns and gloves, our clinicians are humans too. They can have “off” days just like us, they have outside stressors like us, and sometimes they may not have all the answers. But, they're dedicated to helping us and trying their best to keep us healthy.
As Dr. Batalden said, “Sometimes the growth is in humility and learning to listen; sometimes it requires a growth in confidence and courage and learning to speak up. Fortunately, in CF care -- patients and families and care teams have time to grow together, to grow up together if they prioritize it and work on it.”
You can see this awesomeness for yourself below.
After the plenary, Dr. Batalden, Cindy George, and I discussed partnerships in CF care on Facebook Live.
Join the conversation on Facebook.
Adult with CF
Melanie is a patient advocate, a champion with the Cystic Fibrosis Foundation, and a member of CF advisory boards. Having studied nursing and psychology at Northeastern University, Melanie has always been passionate about people and helping to ignite positive change. Melanie lives in beautiful Massachusetts with her husband, Mark, and son, Myles. She loves hiking, writing, being by the ocean, and spending time with her tribe. But mostly, she’s busy just trying to be a good human and raise a good human.
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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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