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.
Today I am proud to introduce More Than CF. Your struggles, your achievements, your routines and the small surprises of your every day breathe life into the Foundation's work. You can get involved by sharing your experiences with us on Facebook, Twitter and Instagram and by searching #morethanCF.
March 14, 2016
WATCH: New Developments in Drugs to Restore Airway Surface Liquid, March 2016
It's Possible to Find Hope Amidst the Loneliness and Isolation of CF
As you may already know, I'm obsessed with
building online communities. Seriously, I go to sleep, wake up and walk to work thinking about how to do this better. I'm also a content strategist. That means I'm constantly on the hunt for fun and different ways to present important information about cystic fibrosis to people online.
Today I am proud to introduce More Than CF, a new way that people
living with CF and the people closest to them can share information and experiences with each other and those of us at the Foundation.
Here at the Cystic Fibrosis Foundation, we do data really well: Through the
CF Patient Registry, we collect information about people living with CF so that researchers, clinicians and the community can get a clearer picture of the affected population. Clinicians gather information during patient visits so that we can improve the
care center experience and understand how to better support daily care. We
fund and promote research to create
treatments and therapies, and to target the underlying cause of the disease.
But if we're only looking at population numbers and hearing from clinicians and scientists, we're looking at only two dimensions of cystic fibrosis. People living with CF plus their
family and caregivers -- YOU -- are the third dimension.
Your struggles, your achievements, your routines and the small surprises of your every day breathe life into the Foundation's work.
The premise of #morethanCF runs in three linked stages: Ask. Analyze. Share. First, using Foundation data as a jumping-off point, we'll ask a series of questions about life with CF that gets at more than just treating it. Second, we'll gather your tips and stories, analyze them and put them into graphics to give you a clear view of the community's responses. Finally, we'll share that information through social media and email -- and we'll encourage you to share as well -- so we can all learn from each other.
We're starting with a topic that's familiar to everyone living with CF:
airway clearance. We know the numbers regarding ACTs, such as 73 percent of people with CF
use the vest to clear their airways. But using the vest takes time. How are you passing the time when you're using your vest? What Netflix shows or YouTube channels are you watching? Do you have another go-to activity that helps clear your lungs? These are the kinds of things we're hoping to get at with #morethanCF.
Want to make sure you never miss a question or the community's answers? Sign up for our
emails, follow the Foundation on
Instagram and make sure you search for #morethanCF.
Online Community Events Lead, Cystic Fibrosis Foundation
Emily is the online community events lead at the CF Foundation. She comes to the Foundation after serving for three years as digital director at the Peace Corps. Emily has worked as a digital strategist for nonprofits, agencies and political campaigns, including three years with Organizing for America. In 2006, Emily earned a master's degree in cross-cultural journalism from the Missouri School of Journalism. She loves traveling, reading, exercising, cooking and eating well.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It 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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