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.
COVID-19 Community Questions and Answers (Updated: January 21, 2021)
The Cystic Fibrosis Foundation has prepared Q&As to address key concerns we have heard from the CF community regarding the coronavirus (COVID-19) outbreak, including information from the CDC on the risk to people with underlying health conditions and steps you can take to protect yourself and your loved ones living with cystic fibrosis.
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Updated January 21, 2021
We are aware that the coronavirus (COVID-19) outbreak is causing significant concern, particularly within the cystic fibrosis community. The following Q&As are intended to address key concerns the Cystic Fibrosis Foundation has heard from the CF community about COVID-19, including information from the Centers from Disease Control and Prevention (CDC) on the risk to people with underlying health conditions and steps you can take to protect yourself and your loved ones living with cystic fibrosis.
Watch as Melanie Abdelnour, adult with cystic fibrosis, leads a discussion about vaccines and people with CF with experts o Christian Merlo, CF Center Associate Director and Associate Professor of Medicine & Epidemiology, Pulmonary Care, Johns Hopkins University and Mary Dwight, SVP and Chief Policy & Advocacy Officer and Al Faro, VP of Clinical Affairs at the CF Foundation.
What vaccines have been approved for COVID-19?
Two vaccines have received U.S. Food and Drug Administration (FDA) authorization. The first, from Pfizer, was authorized on Dec. 11. The second, from Moderna, was authorized on Dec. 18. Submissions for additional vaccines are anticipated in early 2021. Learn more about how a vaccine is evaluated for use by the FDA here.
Can I choose which vaccine to get?
Because supplies of authorized vaccines are limited, you will likely only have one option when a vaccine becomes available. That option, along with all other vaccines, must meet the same, strict criteria for safety and efficacy before it can be authorized by the FDA and offered to the public.
When can I get vaccinated?
How will I know if a vaccine is safe and effective for me?
Have people with CF been in clinical trials?
Where can I find more information about participating in a vaccine trial?
Can I be vaccinated if I'm currently enrolled in a CF clinical trial?
Do the authorized vaccines protect against new COVID-19 variants?
Does the Foundation recommend one vaccine over the other?
Do the vaccines interact with medications? Specifically, modulators like Trikafta®?
Can you receive a COVID-19 vaccine at the same time as another vaccine like the flu vaccine or shingles vaccine?
What if I have allergies to medications or food? Can I still get vaccinated?
I have CF. Can family members in my household also get vaccinated to keep me safe?
I had COVID-19. Should I still get vaccinated?
When can children get vaccinated?
Can those who are pregnant get vaccinated?
Can you get the vaccine if you are breastfeeding?
I had an organ transplant. Should I get vaccinated?
I am waiting for an organ transplant. Should I get vaccinated?
Until I get vaccinated, how can I stay safe?
How much will a vaccine cost?
Do I need both shots to be vaccinated?
What are the side effects?
What about severe allergic reactions?
How long will I be protected after I get both shots?
Do I still have to wear a mask, wash my hands, and keep physically distanced after I get vaccinated?
Can people who have been vaccinated still infect people even though they are not ill?
Will the CF Foundation track COVID-19 vaccine data in the CF Foundation Patient Registry?
What is the review and approval process for vaccines in the United States?
What is the CF Foundation doing to support the CF community related to the COVID-19 vaccine(s)?
Do I still need to get a flu shot this year?
When should I get a flu shot?
How can I get a flu shot without increasing my risk of being exposed to COVID-19?
Can I get flu and COVID-19 at the same time?
Will a flu shot protect me from COVID-19?
Does getting the flu shot increase my risk of getting COVID-19, or having serious complications if I do?
Watch as Ginger Birnbaum, mother of a child with cystic fibrosis, leads a discussion about school reopening and people with CF with experts Clement Ren, MD, Professor of Clinical Pediatrics and CF Center Director, Riley Hospital for Children and Indiana University School of Medicine, Sarah Strong, School Liaison Specialist, Cincinnati Children's Hospital, Sue Sullivan, Senior Director, Head of Community Partnerships at the CF Foundation.
How has COVID-19 affected children with CF?
Need help deciding what activities are safe? Download this risk-assessment grid.
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