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.
Lung transplantation is a demanding procedure -- physically and emotionally. Recovery in the hospital can be complicated and slow. Life after a transplant requires a lot of discipline.
Article
Blog Post
Caring for Your New Lungs
Taking care of your new lungs is a big responsibility. Your transplant team will help you learn how to reduce the risk of infection and rejection and keep your lungs healthy.
Learn more
Explainer
Surgery and Recovery
Surgery and recovery involves more than replacing your lungs. The process also includes making the physical and emotional adjustment to life with your new lungs.
Life After a Lung Transplant
Life after transplant includes taking care of your new lungs -- and your cystic fibrosis.
Coping After Recovery
Transplant and recovery is physically and emotionally stressful. But, there are things you can do to help you cope with the stress and the changes in your life that a transplant can bring.
Pregnancy After Transplant
Becoming pregnant after a lung transplant is possible, but is associated with increased complications. Learning more about post-transplant pregnancy can help you understand the potential risks and health implications.
Unexpect the Expected: What I Learned After My Lung Transplant
I did the research. I asked the questions. I thought I knew what to expect when I had a double-lung transplant. I was surprised by what I learned.
We Go Together: A Post-Transplant Lesson
After two double-lung transplants, my lungs don't have CF anymore, but the rest of me still does. In a very real way, CF isn't "behind me" at all. And that's why I continue to fight.
Changing How I Eat Post-Transplant
After my lung transplant, I discovered I couldn’t keep eating the typical high-calorie CF diet. By learning to practice mindful eating, I have found a new way to enjoy my food.
Finding New Purpose After Getting New Lungs
Not having a roadmap for life wasn’t a problem when I thought I wouldn’t be around long enough to take the trip. A double lung-transplant has me rethinking this belief.
Invisible Scars: My Life Post-Transplant
Although my lung transplant was the end of one story, it was also the beginning of another, more difficult story.
Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
4550 Montgomery Ave. Suite 1100 N Bethesda, MD 20814
301-951-4422
800-344-4823 (toll free)
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