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.
I'm so excited for the 2017 Volunteer Leadership Conference in Dallas, Texas! We can't wait to share the conference with everyone both in Dallas and via the live stream.
March 27, 2017
Meet Our 2017 Great Strides Ambassadors
Updates From a School Nurse With Three Students With CF in One School
Hi friends! My name is Ginger Birnbaum and I have the honor of co-chairing the 2017 Volunteer Leadership Conference with Mike Beatty. We are excited to kick it off in Dallas on Friday, April 7. For the first time ever, registration for the conference is at capacity. If you can't make the trip to Dallas, no worries! We've got a spot waiting for you as part of the group who will attend the conference via live stream. The entire conference, including all of the breakout sessions will be live streamed so that everyone around the country can join us.
Sign up for the live stream here.
I got involved with the Cystic Fibrosis Foundation when my little boy, King, was diagnosed at birth with CF. It was obvious to our family that the Foundation was the best place for us to plug in and make a long-term difference for King.
What didn't we expect? That it would be an amazing experience for the whole family including our little girl, Emma Virginia, who is a tremendous fundraiser and advocate for her brother. Of all the things that my husband and I do throughout the year, we wouldn't miss VLC for anything! We cherish this time to connect with the Foundation and the rest of our CF family.
Here are some tips to be sure that you have the best experience possible via the live stream!
We want this to be an amazing experience for everyone attending VLC this year, both in Dallas and via the live stream across the country. Make sure you throw on some cowboy boots and end your time attending VLC with a celebration!
Mother of a child with CF
Ginger is mother to her son King, who is living with cystic fibrosis. A graduate of the University of Mississippi, she currently works as a community advocate. Ginger is the Peer to Peer Leadership Council Chair, Monroe Carrell Jr. Children’s Hospital CF Care Center Patient Family Partner, Mental Health Advisory Committee member, founder of National Family Team Kenneth King’s Believers, a Tennessee state healthcare advocate, a Foundation event enthusiast, and was the Volunteer Leadership Conference Co-Chair in 2017. She lives on Lookout Mountain, with King, her husband Alex, and their daughter Emma Virginia who is a fierce advocate for her brother.
Share this Post
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.
Follow Us On
Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails