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.
Even though I haven't cultured for nontuberculous mycobacteria, I was excited to learn more about the treatment for the bacteria in people with cystic fibrosis during the virtual session at the North American Cystic Fibrosis Conference.
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I was so excited to have the opportunity to watch more of the North American Cystic Fibrosis Conference sessions this year because of the virtual option. One of the sessions I wanted to listen to was, “The Epidemiology & Management of Nontuberculous Mycobacteria (NTM) Infection.”
I was interested in this session because I had heard of NTM in clinic a few years ago for the first time and then had read some Foundation
blog posts about it. The treatment that I read about to help eradicate NTM was intense. I wanted to better understand the type of treatment that is currently being done and the possibilities of new treatments to target such a resistant bug.
The session was very informative about how NTM may present in people with CF, why treatment may not need to be immediately started after someone cultures NTM, and how transmissible it can be.
I found it interesting to see the different categories of emerging therapies to help treat NTM include repurposing existing drugs, the development of novel drugs that target NTM, and augmenting a host defense against NTM. The first category of emergent
therapy, while not approved by the U.S. Food and Drug Administration for the treatment of NTM, seems to be the quickest way to get additional therapy to individuals who culture for NTM. I was surprised to learn that the antibiotics for NTM were ones I had already taken to help fight other resistant bacteria that I culture. For me, the familiarity of these drugs helps reassure me that there are treatments out there to fight such a resistant bacterium.
I am fortunate that I do not currently culture for NTM, but I know that it is always a possibility. I plan to speak to my CF care team about their approach to treating NTM, especially now with so many CF patients
on CFTR modulators, and whether that means treatment can be delayed or less aggressive than previously. The algorithm used in the PATIENCE clinical trial to
determine treatment for NTM reminded me that CF is such a person-specific disease -- even if a person cultures the same bug as someone else, the treatment may not always be the same.
This session gave me hope that even when infections from “rare” bacteria are found in the CF community, the care teams and researchers don't wait to find novel treatments to improve the lives of people with CF.
I'm thankful for the hardworking researchers and clinicians who spend their time looking for ways to help people with CF fight infections so that they can have a great quality of life.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Meagan lives in southwest Virginia. She has a doctorate in Health Promotion and Disease Prevention research and a master's degree in nutrition. She is also a certified health education specialist. Currently, she is serving her local health district as
the COVID-19 epidemiologist and is an assistant professor at a regional state university. Meagan serves the CF community as a member of the Ear, Nose, and Throat Guidelines Committee and Teen Connections, and she actively participates in research
trials at her CF care center. She is obsessed with her two mastiffs, Mya and Warren, and enjoys traveling with her husband, Ches.
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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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