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.
Join us via live stream for the 2016 CF
Foundation Volunteer Leadership Conference and make your voice heard.
March 3, 2016
Changing How the Foundation Partners With People With CF
How A Letter to the President Turned Into a White House Invitation
The need to find innovative ways to include the
cystic fibrosis community is at the forefront of our minds. We want to ensure
that people with CF and their families do not feel isolated or excluded
in conversations about their care and wellbeing. We feel that
it's important to include their voices in everything we do, especially in our
On March 11-12, we are hosting our annual Volunteer
Leadership Conference and we'd like to invite you to join
us via live stream and make your voice heard from the comfort of
your own home or favorite coffee shop.
You will be able to
ask questions throughout the conference and connect with us on
our social media channels using the hashtag #CFVLC2016. We want
to hear your thoughts and ideas on the various topics discussed
throughout the conference.
Left: Cheriz Kunkel joins the conversation by tweeting while doing her breathing treatments during the 2015 Volunteer Leadership Conference. Right: Marissa Benchea moderates the first ever panel discussion between adults with CF at the Volunteer Leadership Conference in 2014.
The 2016 Volunteer Leadership Conference marks the third
year that we will host a panel discussion between adults with CF
regarding topics identified by, and for, the CF adult community. Be
on the lookout for the CF adult panel, moderated by Andy Lipman, who
recently invited us into his home to learn more about his life with CF. Andy will moderate a discussion focusing on
relationships -- between significant others, friends, parents and
children -- alongside Julia Rae and Katharine Scrivener.
Kristin Dunn moderates a discussion between two adults with CF during the 2015 VLC. The primary focus of this panel was on cystic fibrosis as an invisible disease and how people with CF engage with each other and the CF community.
for the live stream today and watch this session as well as
many others, including the "State of the Science" update and "Advancing
the CF Care Model."
Senior Manager of Community Partnerships, Cystic Fibrosis Foundation
Danielle listens to and partners with people with CF and their families to create meaningful opportunities for connection. She also leads the creation of online spaces and events for people in the CF community to connect, learn, share and inspire each other. Danielle earned her B.A. in communications from American University in Washington, D.C. She currently lives in Littleton, Colo., with her husband Vince and dog Baci.
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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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