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.
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.
Last updated on April 15, 2021
Esta página también está disponible en español.
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 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. Este video también está disponible en español.
Three vaccines have received U.S. Food and Drug Administration (FDA) emergency use authorization:
Learn more about how vaccines are evaluated for use by the FDA here.
Because supplies of authorized vaccines continue to be limited, you will likely only have one option when scheduling an appointment.
No, the Foundation does not recommend one vaccine over another. The Foundation supports the use of the authorized COVID-19 vaccines for people living with CF and strongly encourages that people with CF discuss how to get vaccinated with their care teams. Read the Foundation's statements.
Yes, people with CF have participated in vaccine clinical trials. Four people with CF participated in the Janssen clinical trials. We are uncertain how many participated or what their experience was in the Pfizer-BioNTech and Moderna trials. However, 8% of people in the Pfizer-BioNTech clinical trials who received the vaccine and 5% of people in the Moderna trials who received the vaccine had chronic lung disease.
You can find more information about vaccine clinical trials by visiting:
Before getting a vaccine, people who are participating in a CF clinical trial should discuss getting the COVID-19 vaccine, and the timing of the vaccine, with the study doctor and/or research coordinator.
Although there is no data regarding interactions, there is no reason to believe that the vaccines will interact with CF medications, including CFTR modulators. We strongly encourage all people with CF to get vaccinated after discussing it with their care team.
The CDC recommends that people receive a COVID-19 vaccine alone at least 14 days before or after receiving any other vaccines, such as influenza or shingles vaccines.
The CDC recommends people who have had severe allergic reactions that are unrelated to vaccines or injectable medications get vaccinated. These include allergic reactions to:
People with a history of allergies to oral medications or who have a family history of severe allergic reactions can also be vaccinated.
Talk to your doctor about what you can expect, when to seek medical attention if you experience a bad reaction, and if you have had an allergic reaction to vaccinations or injectable therapy in the past. Learn more about precautions associated with severe allergic reactions here.
The limited supply of vaccines will be reserved for people who are at greatest risk for exposure to the virus as well as those at greatest risk of severe COVID-19 illness. If members of your household meet the criteria due to their job, age, or health condition, they may receive priority access for the vaccine. Vaccine appointments are opening up to the general public as supply increases.
A person who had COVID-19 and recovered may be at risk of becoming infected again. Past infections may bring about some natural immunity, however, it is not known how protective natural immunity is or how long that protection would last. A vaccine may offer longer-term protection from COVID-19 than natural immunity. Your CF care team can help you determine if getting a vaccine is right for you.
Pregnant people with COVID-19 are at increased risk for severe illness. Individuals who are pregnant can get vaccinated and are encouraged to discuss the benefits and risks with their doctor or care team. Pfizer-BioNTech has begun clinical trials to study the safety and effectiveness of the COVID-19 vaccine in individuals who are pregnant as well as in babies from birth until 6 months. Moderna has begun a patient registry to track individuals who are pregnant who receive the vaccine. Janssen plans to begin clinical trials to study the safety and effectiveness of the COVID-19 vaccine in individuals who are pregnant. The American College of Obstetricians and Gynecologists (ACOG) has issued a statement recommending individuals who are pregnant have the option to be vaccinated. You can read the statement on the ACOG web site. To learn more about COVID-19 vaccines and pregnancy before discussing it with your doctor, visit the CDC web site.
Although individuals who are breastfeeding were not included in clinical trials of the authorized vaccines, the vaccines are believed to be safe for breastfeeding infants. However, more information will need to be gathered over time. If you are breastfeeding we encourage you to discuss the benefits and risks being vaccinated with their health care provider. The American College of Obstetricians and Gynecologists (ACOG) has issued a statement recommending that people who are breastfeeding have the option of being vaccinated. You can read the statement on the ACOG web site.
Transplant candidates should be vaccinated while they are waiting for transplant. In general, vaccines are recommended more than two weeks before a transplant. If you receive the vaccine before transplant, both doses should be completed before transplant. The International Society for Heart and Lung Transplantation (ISHLT) has issued a statement encouraging vaccination in patients with advanced heart or lung disease when a vaccine is locally available. You can read the entire statement on the ISHLT web site.
There are many things you can do to protect your health and that of your household until a vaccine is available and, more importantly, until infection rates are reduced. Everyone -- even those who have been vaccinated -- should continue doing what they can to protect their health and the health of everyone around them. Learn more about prevention and safety here.
Most people will be able to get a vaccine without paying out of pocket, including those who do not have health insurance. However, in certain circumstances, you may be charged by your doctor or health care provider for giving you the shots (the cost of the vaccine itself is covered by the U.S. government). If you have questions about whether getting a COVID-19 vaccine is covered by your health insurance or about cost-sharing, call Compass at 844-COMPASS (844-266-7277).
Here are three tips that can help make scheduling a vaccination easier:
Although side effects from the different vaccines may vary, those that have been commonly reported include pain where the shot is injected, fatigue, muscle aches, chills, and fever. These side effects usually go away within a few days and are a sign that your immune system is working. Talk to your doctor about what side effects you can expect after being vaccinated. Vaccine manufacturers and public health officials will continue to monitor side effects as the vaccines are given to the wider population.
More data are needed to determine how long the vaccine provides protection from SARS-CoV-2. The vaccine manufacturers and public health officials will continue to monitor vaccine recipients for several months to years following FDA approval. Over time, we will gain a better understanding of long-term immunity.
Although individuals who have been vaccinated may still transmit the virus, public health officials are monitoring this closely and have found evidence to indicate that vaccines may reduce the risk of transmission. In the meantime, you should continue to maintain physical distancing, handwashing, and wearing a mask, even after being vaccinated.
Yes, we are tracking people with CF who have received a COVID-19 vaccine, the dates of vaccinations, and the vaccine's manufacturer. The Registry are also recording people with CF who were not vaccinated and note the reason why. Information from the Registry has already been used to analyze data regarding people with CF and COVID-19.
As public health authorities authorize and distribute COVID-19 vaccines, we continue to engage federal and state decision-makers about the dangers of respiratory infections for individuals with CF and the needs of the CF community. We continue to call on decision-makers to ensure that all vaccine allocation plans provide prioritized access for people at increased risk of serious illness from COVID-19 infection. The Foundation believes people with CF need a vaccine distribution strategy that is aggressive, predictable, and adheres to science and medicine. Read more about the Foundation's work here.
Resources that can help you in weighing the risks and benefits of school include:
Like other decisions during this pandemic, the decision to allow your child to participate in extracurricular activities is based on personal circumstances. We recommend you speak with your child's care team to discuss the best decision for your child. You can prepare for the discussion by considering the following factors:
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.
People with CF and those close to them should continue taking precautions to keep themselves healthy and follow the CDC's guidance for those at higher risk.
The CDC does not recommend using face shields instead of masks because face shields do not provide as much protection against respiratory droplets as masks.
If you are participating in clinical research, please communicate with the research team about your study visits. Many studies are making changes which will allow you to stay in the study while also making your safety the top priority.
If you have symptoms of COVID-19 (fever, cough, shortness of breath), contact your doctor. Your doctor may recommend you be tested, and the CDC recommends doctors work with local and state health departments to coordinate testing through public health laboratories. Testing requirements, availability, and procedures may vary by location.
Your health care provider can advise you if you need to be tested and what kind of test you should get based on your circumstances.
Need help deciding what activities are safe? Download this risk-assessment grid.
Yes! In fact, we encourage people with CF to get fresh air by going for walks or exercising while staying at least six feet apart from others. We recommend avoiding playground equipment at this time.
Share this Page
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