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.
As a high school nurse, I've worked hard over the last few years to help my three students with CF navigate school safely. A welcome but unexpected change to my plans was helping one of my students get her very own service dog, Rosie.
Rachel Jackson, RN
April 3, 2019
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Walpole, a small suburban town just outside of Boston, has seen a lot of “firsts.” These firsts included a student documentary about three classmates with cystic fibrosis that premiered at our very own film festival, decked out with a real red carpet; a partnership between the school district, the police department, and a service dog organization called Golden Opportunities for Independence (GOFI); and one student with cystic fibrosis receiving an unforgettable gift for Christmas: a service dog named Rosie. Many of these moments have demonstrated how other school communities can best accommodate the emotional needs of all of their students and the unique health needs for students living with CF.
I am a high school nurse responsible for 1,200 students, three of whom have cystic fibrosis. Over the last three years I have had the challenge of planning for and implementing a safety plan for these students. I created a consent form for sharing information specific to CF students, a CF fact sheet for staff, and -- most importantly -- my action plan template. 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. I have been contacted from people all over the world who are interested in my plans.
But the latest development at Walpole has been the partnership among the school district, Walpole Police Department, and GOFI. I was already a volunteer with this organization that breeds and trains service dogs. Around that time, some of the service dogs came into the high school to help the students relieve stress during final exams. The response was so overwhelmingly positive that we sought out something more permanent. We then got the idea that our school resource officer should get a “partner.”
The runt of the litter may have been small in size but made up for that in personality. She had a heart murmur at birth and could not be a single-person service dog. So, we decided to have her be the facility dog for Walpole Public Schools. We appropriately named her Rebel, the name of the Walpole High School mascot. And now, this little Rebel is heart murmur-free! She lives with me full-time and travels from school to school to spend time with the school resource officer during the day, offering comfort and support to the students.
While Rebel was visiting the high school, one of the students with CF become very fond of her. Rebel provided a lot of comfort and support for Sarah, who had a challenging year. Sarah had been trying to convince her parents for years that a dog would be a wonderful addition to the family. After looking into what a service dog could potentially do for Sarah, her father reached out to me. Luckily, a month earlier, a litter was born, so we were able to find the perfect match for Sarah -- a new puppy named Rosie.
Sarah is involved with every aspect of training her puppy. Working with GOFI, Sarah is helping train Rosie for specific tasks that meet her needs, both medically and emotionally.
Sarah's dog is being trained to alert her if her breathing becomes labored during sleep and if her oxygen levels decrease, and she can retrieve medications when needed. The possibilities are limitless for how Sarah and Rosie will grow together.
Rosie has already become a very good learner and Sarah has proven to be an excellent teacher! I know that Sarah and Rosie will have some adventures.
This is how my commitment to CF and my passion for service dogs collided in a small town of firsts. Throughout this collaboration, I have realized the unprecedented power of a community committed to putting every student first. There is also something to be said for a school system and a community's willingness to explore outside the box to achieve excellence. As my three students with CF get older and are getting ready to graduate high school, I will miss them. I can only hope I have played a small part in their bright futures. For any school district interested in any of these successful programs, please reach out to me.
Join the conversation on Facebook. For more information on Rachel's CF action plans, consents, info sheets, and service dog program, please email firstname.lastname@example.org.
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. 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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