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.
Our goal is to educate policy makers about the needs of people with cystic fibrosis so that they make smart decisions about CF-related research, treatment, and access to care.
We recognize the value of tapping into the expertise that only people with CF and their families have. We invite you to share insights to help improve and develop programs and services that support the daily lives of people with CF.
Our mission is to find a cure for cystic fibrosis and improve the quality of life for those living with the disease. We can't do it alone. Help us add tomorrows by giving today.
In addition to working for a cure, the CF Foundation supports programs and policies to improve the lives of people with CF. Help us by raising awareness of CF, participating in a fundraising event, or volunteering with your local chapter.
If you and your cystic fibrosis care team decide that a lung transplant might be right for you, talk with your team about what transplant centers you should consider. Often, this is based on where you live, your insurance carrier and the type of insurance coverage you have.
When you determine where you would like to go, your cystic fibrosis care center will refer you to that transplant center.
For a list of all lung transplant centers in the U.S., visit the Scientific Registry of Transplant Recipients. Not all centers perform transplants for people with cystic fibrosis, so discuss your options with your CF care team.
The team at the transplant center determines if you are a good candidate for lung transplantation. A good candidate is someone who is most likely to survive the difficult process of having a lung transplant. Many factors are considered to make this determination and not everyone is found to be a good candidate.
During the evaluation process, the multidisciplinary transplant team will work to understand your lung disease and the impact it has on your health and well-being. Team members will inquire about your medical history and how you manage your health, and they will perform many studies and consultations.
Should you proceed to transplantation, you will work with your transplant team for the rest of your life. That is why it is very important that while they are evaluating you, you are evaluating them. Gather information about the members of the team. Consider how they interact with you and your loved ones. Do you feel safe with them? Do you feel respected? Do they address your questions and concerns thoroughly and thoughtfully?
Your health care team works for you. This is your body. Your health. And choosing a lung transplant team is one of the most important decisions of your life. If you have any concerns, it is very important to speak up and do so early in the process. Many patients choose to get a second opinion to gather as much information as possible. Your life depends on your partnership with your health care team.
“As I prepared to leave the hospital, I asked for a list of all the reasons I wasn't able to be listed for a transplant. Then, my team, my family, and I made the list of 'impossible' goals.”
- Caleigh Haber
- Caleigh Haber
This section provides important information about how to choose a transplant center and what happens during the evaluation process. You will be in the evaluation phase from the time you are referred to a transplant center until you are actively listed.
It is important to do as much research as possible to find the transplant center that best meets your needs. There are several factors to consider.
The lungs cannot go for more than a few hours without blood flow and oxygen delivery. Many transplant centers will require that you live within a certain driving distance or have a life flight (rapid air travel) arranged to get you to the transplant center quickly.
Most health insurance companies and government programs, including most Medicaid policies, will pay for a lung transplant. However, some insurance companies might require that you get your transplant at a specific transplant center. Check with your CF care team to find out which transplant centers might be a good fit for you and then talk to your insurance company to find out if they cover transplants at those centers.
If you have questions about your coverage, contact Cystic Fibrosis Foundation Compass, a personalized service that can help you with insurance, financial, legal, and other issues. Contact Compass at:
Monday - Friday, 9 a.m. - 7 p.m. ETcompass@cff.org
The United Network for Organ Sharing (UNOS) provides a helpful list of questions to ask your insurance company before a transplant.
No two people with CF are the same. You have unique needs that depend on your specific circumstances. Different transplant centers have more experience dealing with certain challenges than others and not all transplant centers perform lung transplants on people with CF.
It is important to make sure the transplant center you choose is equipped to deal with your case. Some things to consider include:
Ask the transplant center for a list of reasons -- often referred to as “exclusion criteria” -- it would use to exclude patients as candidates for a lung transplant at the center.
If you are evaluated and determined to be eligible for a transplant, you will be added to the national list of people who need lungs. From the moment you are listed and through a period of time after your transplant, you will need to live near your transplant center. You will visit the center often for medical tests, appointments, and rehabilitation. It is important that your transplant center offers services to help you meet these needs so that your chances for a successful recovery are as high as possible.
If you or your family members participate in cultural or religious practices, talk to your transplant coordinator about what kind of resources or accommodations are available at or near the transplant center to meet your needs.
You have the right to be listed at more than one transplant center in different organ procurement regions. Being listed in more than one region gives you primary access to the donors in more than one region. This may or may not have an impact on your waiting time.
When donor lungs become available, they are offered to the person who has the highest lung allocation score on the transplant list. The match list is run first for patients listed with transplant centers in the same UNOS organ procurement region in which the donor lungs are located.
More information on multiple listings is available from UNOS.
1. PubMed: Cystic fibrosis lung transplantation
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