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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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 was thrilled to learn earlier this month that Emily Kramer-Golinkoff, a young woman living with cystic fibrosis, would be honored by the White House as a “Champion of Change” for her work to advance the field of personalized medicine.
July 24, 2015
Starting a Dialogue: The CF Community Blog
CF Community Reacts to Approval of Orkambi
Emily has worked with the Foundation as a volunteer on a number of different initiatives and is such an inspiration within the cystic fibrosis community.
An important honor, Champions of Change are ordinary Americans doing extraordinary things in their communities. Along with eight other honorees, Emily participated in a day of panels, meetings and speeches all focused on the idea that the delivery of medicine can be targeted to a specific person's genetics, lifestyle and environment.
We were invited to attend this exciting event at the historic Eisenhower Executive Office Building.
The main event began with opening remarks by Senior Advisor to the President, Brian Deese. We were also fortunate to hear remarks by Dr. Francis Collins, director of the National Institutes of Health (and member of the team that discovered the cystic fibrosis gene in 1989), among others.
In a panel on precision medicine, Emily beautifully articulated the realities of living with cystic fibrosis. As someone with two copies of a rare nonsense mutation, she talked about working to advance research into this rare form of cystic fibrosis and the power that patients can wield in the search for treatments and cures.
The event is part of President Obama's Precision Medicine Initiative (PMI). Precision medicine is an emerging approach to disease treatment and prevention that takes into account each person's genetic makeup and other factors.
New targeted therapies like Kalydeco and Orkambi that treat CF patients with specific mutations in the CFTR gene are wonderful examples of precision medicine.
Indeed, when the President announced the initiative at the 2015 State of the Union, he noted that, “In some patients with cystic fibrosis, this approach has reversed a disease once thought unstoppable.” The White House has further highlighted how taking the precision medicine drug Kalydeco has markedly improved the health of CF patient Bill Elder, Jr. Bill had the honor of sitting with first lady Michelle Obama at the State of the Union address.
This is a time of great hope and optimism in the cystic fibrosis community, as we discover new ways to treat this disease and embark on the path toward a cure. Emily's story represents the innovative thinking that is going to get us where we need to go.
Check out Emily's post, “Emily's Entourage: Giving Hope to Orphans of Orphan Disease,” on the White House's blog.
Assistant Director of Policy, Cystic Fibrosis Foundation
Stephanie leads the Foundation’s federal policy agenda. Working with Congress, federal agencies and executive branch officials, she develops and executes strategies to promote innovative research, speed the development and review of safe and effective cystic fibrosis therapies, and ensure that those with CF have access to specialized care and treatment. Prior to joining the Cystic Fibrosis Foundation, Stephanie worked on Capitol Hill for several members of Congress. She began her career as an AmeriCorps volunteer at the Montana Legal Services Association in Helena, Mont. Stephanie received her B.A. in politics from New York University and her M.A. in government from Johns Hopkins University.
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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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