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.
Community Voice provides opportunities for people with cystic fibrosis and their family members to actively shape research and programs that affect the CF community.
Community Voice is composed of more than 1,000 members, including people with cystic fibrosis and their families. Members are directly impacting programs and initiatives for the CF community by sharing their experiences and insights with the Cystic Fibrosis Foundation and other organizations and researchers working in CF.
We can't be successful without the input of the CF community, and Community Voice is the avenue for getting that input. Because each person's experience is unique, it's critical to hear from as many people as possible. Whether filling out a survey or participating in a focus group or committee, Community Voice members are helping to shape efforts for the entire CF community.
“We don't know what is important to everyone, and we won't know unless we hear from everyone.” -- Mary Sullivan, Community Voice member
Any individual ages 16 or older who has CF or is a family member of a person with CF can sign up to be a part of Community Voice.
After filling out a registration form about yourself and your interests, you'll receive regular requests via email to share your perspective and thoughts in surveys, focus groups, committees, and working groups.
The best part? It's a no-pressure way to get involved. You choose how much -- or how little -- you want to be involved and which topics are of the most interest to you.
Want to know more? Check out our Frequently Asked Questions or email firstname.lastname@example.org.
Research Voice is a subgroup of Community Voice that is focused on influencing the direction and conduct of research. By partnering with the CF community in this way, the CF Foundation is more able to prioritize research initiatives that matter most to the community, improve the design and conduct of studies, and better educate the community about research.
When you join Research Voice, you'll receive special training and have a chance to be more involved in research initiatives.
Want to join Research Voice? Become a member of Research Voice by signing up for Community Voice.
Your unique perspective and experience with cystic fibrosis are vital to the success of research and programs at the Foundation and beyond.
Community Voice members already have helped the CF community by doing the following:
Check out all of the ways our members have made an impact through Community Voice in our monthly results updates and 2019 Annual Report.
“What I like the most about Community Voice is the ability to share my experiences and opinions, and seeing that information making a difference." -- Aimee Lecointre, Community Voice member
Are you working on a project that could benefit from the CF community's insights? In addition to the CF Foundation, Community Voice works with external groups including rare disease organizations, care centers, researchers, and academic organizations. Learn more about how you can incorporate community input into your research.
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With more than 70 chapters and offices across the country, there are plenty of ways to get involved.
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