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.
When we set out to create the Foundation's new website, there was a lot we wanted to accomplish. Our goal was a modern, visually compelling CFF.org that provides more helpful information for the millions of people who visit each year. But we wanted to do something much more, too.
July 13, 2015
Our Day on the Hill
For years, the Foundation's tagline has been adding tomorrows and we do that in many ways: funding research, leading drug discovery and development and supporting the highest quality care for people with cystic fibrosis. The search for lifesaving treatments and a cure is at the core of everything we do.
This site will continue to highlight the work we're doing to add tomorrows, but with half of all people with CF now over the age of 18, we also want it to help people with CF live better lives today.
With the newly launched CFF.org, we'll do that in lots of different ways.
You'll find expanded health information and improved resources designed to help you in your daily life — resources on
staying healthy. This is just the beginning of our work: we'll continue to roll out new and expanded information on topics like lung transplantation, coping with mental health challenges, and managing CF while traveling. The website will continue to evolve to bring you the most up-to-date information available.
And, because no one knows more about the day-to-day challenges of this disease than the people living with it, you'll also find the
words, stories, and images of people with CF throughout the site.
If you're reading this, you've already discovered the feature of the new site I'm most excited about — our community blog. The blog is a place to hear firsthand from people with cystic fibrosis, parents, volunteers, clinicians, researchers, friends of people with CF — anyone whose life has been touched by this disease. After you're done with this post, consider checking out
Piper Beatty's great story about the power of digital connection. If you have an idea for a blog post, we invite you to write to us at firstname.lastname@example.org.
There are so many people with cystic fibrosis doing interesting and amazing things — going to college, starting families, running marathons, climbing mountains — and the list goes on and on. And so often those same people are also struggling to pay the bills, find time to manage the burden of treatments, and figure out how to explain CF to their employers and friends.
We want to showcase all aspects of life with cystic fibrosis. The good, the bad...and the just plain messy.
We hope you will not just read the blog, but also weigh in and share your thoughts in the comments section at the end of every post. Our goal is to listen and create a space where people in the community can talk with each other. Life with CF brings many questions. We don't have all the answers. Many times, the best wisdom and advice will come from the CF community, so we hope you'll share your perspective.
And we hope you'll find that the things you've always done to support our mission become even easier with better online tools for getting involved, donating, and raising awareness.
Many in the CF community have given us feedback on the redesign — people living with CF, parents, researchers, volunteers, and clinicians — and we're better for that input. These contributions have led to a site that we hope will be not just a hub of news and information, but also a source of inspiration and community for all those living with cystic fibrosis — and everyone who supports them.
So…what do you think of the new site?
Former Senior Vice President and Chief Communications Officer, Cystic Fibrosis Foundation
Amy served as senior vice president and chief communications officer for the Cystic Fibrosis Foundation until 2018. She is passionate about telling the CF story and using digital media to connect and empower the cystic fibrosis community. Follow @amydemaria on Twitter.
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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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