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.
Growing up with my sister, who has cystic fibrosis, has its challenges. Although it is sometimes difficult to watch her have to miss out on the things she loves, I've been able to learn so much and connect with many other amazing family members of those with CF.
April 2, 2018
Stuff Our Care Teams Say
That Time We Went Viral and Where We Actually Are Today
My older sister, Lauren, is 15 and was diagnosed with cystic fibrosis when she was 2 weeks old. I am 13, so CF has always been a part of my life. In our house, the daily breathing treatments and many medications are a normal part of life, as are the frequent doctors' appointments.
One of the biggest challenges of having a sibling with cystic fibrosis is when my sister is hospitalized. She has been in the hospital 10 times throughout her life, usually for at least two weeks at a time. The most difficult thing for me about Lauren's hospitalizations is not being able to hang out with my sister and see her every day. My parents also spend a lot of time going back and forth from the hospital to stay with Lauren, so I don't get to see them as often either.
Although two weeks doesn't seem very long, when my sister is in the hospital, it feels much longer. It is very hard for me to watch my sister not be able to see her friends and family, go to school, and do the things she loves, such as playing sports.
My day-to-day life is also very different from someone who doesn't live with someone who has CF. Lauren has to take lots of time out of her day to take medicines, do treatments, and manage the many other things it takes for her to stay healthy. These crucial parts of Lauren's day are very difficult for us because it takes away from the time we can spend together.
Between her many medications and tube feedings, Lauren's CF treatments often interfere with her time to hang out with family and friends. Although this can be challenging, it does not stop Lauren -- as she still plays a lot of sports and is involved in many activities. Lauren has always been an inspiration to me because no matter what obstacles come her way, she perseveres and stays strong.
Throughout my life, I have been able to learn so much, meet many amazing people, and help spread awareness about cystic fibrosis. I even started a fundraiser at my school for CF when I was in fifth grade, which I continued in sixth grade and will do again this year. Last year, I was invited to attend Teen Advocacy Day in Washington, D.C., where I met so many wonderful people and learned a lot about other people's views, experiences, and how they cope with having a family member with CF.
Although there are many challenges that come with CF, the relationship that I have with my sister has only gotten stronger over the years. I am passionate about improving the treatments and medications for people with CF so that Lauren can continue to do all the things she loves to do. My ultimate goal, however, is to help find a cure for cystic fibrosis so that my sister and everyone with CF can lead full lives without any limitations.
Sibling of a person with CF
Katherine is 13 years old and in the seventh grade. She lives in Royersford, Penn., with her parents and 15-year-old sister, Lauren, who has CF. Katherine is actively involved with the Cystic Fibrosis Foundation, and has helped with many CF fundraisers. She also attends the Great Strides walk every year with her family and friends. In addition to fundraising, she is a CF Foundation Teen Advocate and is passionate about making sure her sister receives the best care possible. She also enjoys acting in local theater, journaling, and traveling with her family.
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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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