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.
The video of the second plenary at this year's North American Cystic Fibrosis Conference was focused on lung transplantation and is now available to watch online. Having had a lung transplant and as one of the people with CF featured in the video, this particular session had a personal meaning for me.
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I am a 43-year-old with cystic fibrosis who has had a double lung transplant, and I am doing very well! I am lucky to be here and even luckier to have had such a wonderful medical team supporting me throughout my journey.
Please watch the video of this year's North American Cystic Fibrosis Conference (NACFC) second plenary as Dr. Joe Pilewski discusses the difficult but necessary conversations about transplant. I feel it is extremely important for all of those involved in a CF patient's life, from the clinicians to the family members, to be able to discuss the possibility of transplant and what that will mean.
Dr. Pilewski speaks of the different steps that should be taken during the transplant process, and the importance of each step in having a positive outcome. He discusses the benefits of starting the transplant conversation early and gives examples of patients -- like me and others -- who have been placed on the list.
Sharing my experience about how it felt to have the transplant discussion and being listed was extremely important to me because I had already been a part of the transplant process. My brother, Joe, had a transplant 15 years prior to mine. Being there for support and being there as a patient on the other side are two very different things and the emotions involved are also very different.
I also feel it is extremely important for the CF care center team to advocate for their patients. You will see in my video how lucky I have been to have such a wonderful CF care team that worked to find a transplant facility.
Not only did my CF care team help me find a transplant center, but they also needed to make sure that the transplant center would be open to having me as a patient with all of my bugs! I feel a huge part of my continued success has been because both the University of Pittsburgh Medical Center (UPMC), where I had my transplant, and the University of North Carolina (UNC) were willing to see me as an individual and work together to maintain my health both pre- and post-transplant. In fact, after one center wouldn't list me as a transplant candidate, my CF care team went to bat for me with the transplant team -- at the 2009 NACFC -- so I could be listed.
I am so very grateful to the wonderful doctors who have made my life better, such as Ray Coakley and Joe Pilewski, both of their teams at UNC and UPMC, and all of my family and friends who have helped keep me alive and able to do all of the things I love like tennis, pilates, and most importantly, being with my amazing family. Thank you for the miracle of new lungs!
You can see a video of the entire plenary session here.
Adult with CF
Diagnosed at birth with cystic fibrosis, Mindy grew up in Ohio. She met her husband of 18 years in college and pursued a full-time career until the birth of her daughter. Although Mindy lived most of her life in Ohio, Mindy, her husband, Mike, and their 16-year-old daughter, Abby, have lived in North Carolina for the past 12 years. In 2010, Mindy underwent a double-lung transplant and has been doing very well since. She now gets to do all the activities she loves, including pilates, yoga, tennis, and -- most importantly -- spending time with and caring for her family again.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.
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