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.
You may be waiting for a transplant for a long time. While you're waiting, there are some things you will have to do in addition to your normal routine, to ensure you remain healthy and eligible for transplant.
You will have appointments with your transplant team while on the waitlist. The frequency of these appointments will depend on your health while on the waiting list and the transplant center, as each center has different requirements for how often they
want to see you. At these appointments, tests will be done to inform the team about your condition and update your lung allocation score.
It is extremely important that you attend all of your scheduled appointments and take all medications as directed by your transplant team. Doing so will help you stay healthy and avoid problems that could prevent you from having a transplant. Always notify
your transplant team if you are hospitalized for any reason or if there are any additions or changes to your medicines.
Some transplant centers may have additional requirements for patients. You may have to participate in pulmonary rehabilitation or receive education about the transplant process. Your transplant team will talk to you about the specific activities required
while you're waiting for a transplant.
The things you have always done to manage your cystic fibrosis will continue to be important as you wait for a transplant. Your new responsibilities in preparation for a transplant will not replace your CF treatment plan or care routine.
It is important that you:
Talk to your transplant team about what is recommended for you.
The phone could ring at any time to let you know that there are donor lungs available for you. The transplant team needs to know how to reach you 24 hours a day, 7 days a week. You also should provide the team with the contact information of family and
friends who know how to reach you. If you plan to be out of town -- even for a day -- alert the transplant team about your plans. They may suggest that you remain within a certain distance of the hospital.
It is important to be prepared to leave your home in a hurry. Have your bags packed with all the things you will need for a 2-3 week hospital stay. Plan for how you will get to the hospital.
There is no question too big or too small. Use the time you have on the waiting list to learn as much as you can. The transplant team will answer any questions you have about the transplant process. Your social worker also may be able to provide you with
reading materials so that you can educate yourself further about lung transplants. There are also other people with CF and families who have gone through the process and can share their experiences with you.
If you feel well enough to keep doing the activities you enjoy, it is strongly recommended that you do so. If you don't feel well enough to do those things, see if you can modify the activities to accommodate your condition, or try something new. Staying
busy will help pass the time and keep your spirits up while you wait.
Once donor lungs become available, you will be called to the hospital. If the lungs are healthy, you will have your transplant within a few hours. A donor's lungs must be transplanted from the donor to the recipient shortly after the donor's death.
It is very common to be called to the hospital only to discover that the donor's lungs are not healthy enough for you to take them. This is referred to as a "dry run." Maybe this will never happen to you or maybe it will happen more than once. If it does
happen, it can be extremely frustrating. It is important to remember that the lungs are being withheld in your best interest.
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