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.
About a year and a half ago, I started preparing for three students with cystic fibrosis at the school where I work as a school nurse. Here's an update on how things have been going.
Rachel Jackson, RN
March 23, 2017
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About a year and a half ago,
I started preparing for the 2016-2017 school year. As the school nurse at a small-town high school, I am used to preparing for the school year in advance. This year, however, was going to be a bit more challenging; I would have three students with cystic fibrosis
under one roof.
Fast forward to today, and I am now in the throes of it. Fortunately, my research and preparation appear to have paid off. Although I've made a few tweaks to my plans, all in all we are having a good year. The action plans I set up for each of the students have been a tremendous help for them and the staff. Each student with CF knows the rules when using common areas, and the teachers have copies of the plans so they can make sure everyone is where they should be.
One major reason things have gone so well is due to the amazing staff and administration at the Walpole High School (WHS). As you may recall, I had planned a school-wide meeting at the beginning of the year where I presented everyone with a picture and action plan for each
student with CF.
I literally started off the meeting by saying, "I cannot stress to you all the importance of the information I am about to give you. There could very well be deadly consequences if you do not take this very seriously."
After that grabbed their attention, I gave them all a CF fact sheet and proceeded to give them a crash course on CF. I will be honest with you -- I was rather surprised at the overwhelmingly positive and proactive responses I got. The staff has been nothing short of amazing. They always call me if they are going to change classrooms, have general questions, or need some supplies like disinfecting wipes or tissues. It is a matter of ongoing education for staff, which they have been very open to.
The student body has been very receptive as well. The school newspaper did a feature article on CF and our three students. One of the writers interviewed each of the students with CF, their parents, and me. She did a ton of research and wrote a very eye-opening article to help educate all students about CF.
Perhaps the most exciting thing that has come about is that the film department is working on a documentary about CF to premiere during the high school's 2018 film festival, with the older brother of one of the students with CF serving as the director.
WHS has had a film festival (complete with a red carpet) for the last 14 years. It has become a very big deal in town and is well-attended. The film, which also will be a fundraiser for CF research, will include interviews from students and their parents, as well as the parents of my best friend in high school who later died of CF. Doctors from Boston Children's Hospital also are scheduled to give their input.
After my first blog was posted on the CF Community Blog, it was republished in the National Association of School Nurses Digest. I am extremely surprised at the overwhelmingly positive support and feedback I have received. I have heard from over 100 different nurses and about 50 different parents from all over the United States asking for copies of my resources. I even created a consent form for sharing information specific to CF students, a CF fact sheet, and most importantly, my action plan template. I am so pleased to have had the opportunity to share all of my hard work with so many people. I can only hope that my efforts have helped others.
If you are interested in seeing Rachel's consent form, fact sheet, and action plan template, feel free to email her at
Rachel Jackson, RN
School nurse of three students with CF
Rachel is the school nurse at Walpole High School in Walpole, Mass. She earned her master's degree in education and has many years of acute care experience and expertise in pediatrics, maternal and child health (MCH) home visit nursing, and hospice. Rachel has wanted to be a nurse since she was very young, and her aspirations were only confirmed later in life when she became good friends with a classmate who had CF. Recently, she has been faced with the challenge of accommodating three students with CF who will attend the high school together. Email Rachel at email@example.com.
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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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