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.
At some point -- maybe not now but possibly many years from now -- your lungs may not work well enough to do the job your body needs them to do. Lung transplantation is the most effective way to improve your quality of life and chances of survival if you have very severe lung disease.1
Even though it might be several years before you reach this stage, it is important to be proactive so that you can get the care you need as soon as it becomes necessary.
A lung transplant requires a lot of planning and preparation. For this reason, most cystic fibrosis care teams will begin discussing a lung transplant with you before you really need one. You may want to talk to your care team about it if they haven't discussed it with you, so that you have the information you need when the time comes to be evaluated.
When you and your transplant team determine that you are ready to undergo lung transplantation, your name will be placed on the national waiting list with the United Network of Organ Sharing (UNOS). Once you are listed, it may take days, months or years before a suitable donor is found for you. The actual wait time is impossible to predict because it is influenced by many factors including your blood type, size of the lungs and the attributes of the donor, as well as other people on the list. This unknown can be one of the most stressful aspects of the transplant process.
While you are on the list for a lung transplant, it is very important that you stay physically active and are always ready to go to the hospital. Lungs may become available at any time, so it is essential that you regularly communicate any changes in your health status -- from medication changes to hospitalizations -- to your transplant team.
You, your CF care team and your lung transplant team will work together to help you stay as well as possible while you wait for your new lungs. Lung transplants are recommended only for patients who are likely to thrive after the transplant. Patients who are not expected to survive the procedure or the recovery process are removed from the waiting list. Similarly, people who have changes in their lifestyle that threaten their survival (i.e., people who no longer meet the terms necessary for active listing) are removed from the list.
Staying emotionally prepared can be a challenge for you and your loved ones. Talk with your transplant social worker about resources that the transplant program may have to help you cope with the stress of waiting. Many centers offer patient support groups or mentorship programs, and there are several online resources that may be helpful.
Watch the webcast below featuring Peter Mogayzel, M.D., Ph.D., and Michael Boyle, M.D., FCCP, to learn more about considering a lung transplant, including:
1. PubMed: Lung Transplantation for Cystic Fibrosis: 6-year follow-up
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