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.
If the transplant committee thinks transplant surgery would be harmful to you, ask your transplant team about what options you have. It is possible that you will need to receive treatment for another medical condition before you may be considered a good candidate for a lung transplant.
Getting a second opinion is strongly encouraged if you are not approved for listing at your first transplant center. It is possible that another transplant center may make a different determination and accept you as a transplant candidate. The Cystic Fibrosis Foundation lung transplant referral guidelines recommend that you consult with at least two transplant centers -- including one that has experience with your specific barriers or contraindications -- before determining that you are ineligible for a lung transplant. Sometimes, a phone call from your CF doctor to another transplant center (“consultation” by phone) can be enough to determine whether you might be an acceptable candidate at the other center.
If you are being considered at a different center, you will be asked to meet with the members of the second transplant team to undergo an evaluation. In some cases, you may need to repeat testing at the second center, but this decision is made by the evaluating transplant center and will vary from center to center. In addition, your insurance may not cover the costs of additional testing.
You may decide that you do not want to move forward with the lung transplant process and instead, live the rest of your life on your own terms. There is nothing wrong with choosing this path. If you do decide to forgo lung transplantation, you will work with your CF care team to pursue alternatives, such as palliative care, to develop a care plan that aligns with your personal goals.
You may decide at any point before your transplant that you do not want to go through with it. The only point at which it is too late to change your mind is after the transplant is done.
“The final deterrent for new lungs was how going through the whole process and learning about the requirements of qualifying for transplant made me feel. I went to bed stressed and woke up stressed as well. I was miserable until I made my decision.” -- Randal Haller, adult with CF from the CF Community Blog
If you cannot or do not want to move forward with a transplant, you can choose not to be added to the transplant list. Though it is upsetting to think about what will happen as your health declines, it is important to discuss your wishes with your loved ones so that they can ensure that your wishes are honored. Support services are available to assist you and your family when you need them. Many of these services require insurance coverage.
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