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 FAQs 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 August 4, 2020
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We are aware that the coronavirus (COVID-19) outbreak is causing significant concern, particularly within the cystic fibrosis community. The following FAQs 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.
We encourage you to refer to the Centers for Disease Control and Prevention (CDC) for the most up-to-date information.
With many schools reopening, should anyone in my household be in school if they, or someone else in our household, has CF?
What should I (or my child) do about college in the fall?
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.
Are people with CF at increased risk for COVID-19 infection?
Am I at increased risk for COVID-19 because I had a transplant?
Is there any way to tell the difference between normal CF symptoms and COVID-19 symptoms?
What's been the experience of people with CF with COVID 19?
What precautions should people with CF be taking related to COVID-19? Is there anything I can do beyond handwashing to protect myself/my family?
Should I wear a mask?
Should we be taking chloroquine or hydroxychloroquine to prevent getting COVID-19?
Can the Foundation provide masks, hand sanitizer, and/or gloves to care givers or members of the CF community?
I'm worried the person I live with could get infected. What should I do?
Is it safe for me/my loved one with CF to travel?
What if I can't work remotely?
How can I protect myself at work?
How can I protect myself commuting to and from work?
Is it safe for me/my loved one to continue going to clinic visits?
How should we handle medical appointments that can't be avoided, such as blood draws?
Is it safe for me to take ibuprofen?
How is the Foundation helping to fund spirometers in support of telehealth?
What should I do if I am currently participating in a clinical trial?
How do I get tested for COVID-19?
What is the difference between viral testing and antibody testing?
What is viral testing?
What is antibody testing?
Which test should I get?
Should I get tested?
Is testing covered by insurance?
Does a positive antibody test mean I can't get COVID-19 and I can go back to normal life?
What do viral test results mean?
Are there any treatments for COVID-19?
Are routine CF medications helpful for treating COVID-19?
What is the Foundation doing about COVID-19 triage plans?
My state is reopening. Is it safe for me/my loved one to resume normal activities?
Can I go on regular errands, like shopping for groceries?
Should I stockpile medicines or supplies?
Can people go outside during the COVID-19 outbreak?
Are summer activities safe?
Is it safe for me/my loved one with CF to go to work?
This situation has caused a lot of anxiety in me and my family. What can I do?
How is the Foundation advocating on behalf of the community related to COVID-19?
Are there specific policies that the Foundation has supported related to COVID-19?
We have supported state and federal policies alongside other organizations to address issues faced by people in the CF community related to COVID-19. For an in-depth look at our advocacy efforts surrounding COVID-19, you can read more here.
As states begin to re-open their economies and bring people back to work, is the Foundation doing anything to protect those who cannot go back to work as easily?
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