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.
Cystic Fibrosis Foundation Compass is a personalized, one-on-one service that provides people living with cystic fibrosis, their families, and their care teams with a partner in dealing with challenges related to life with CF.
The Cystic Fibrosis Foundation's patient assistance service, Compass, is a personalized service to help with the insurance, financial, legal, and other issues faced by anyone with cystic fibrosis, their family, and their care teams. The Compass team strives to provide excellent service to anyone living with CF or their loved ones, regardless of income or insurance status. We listen closely, explain thoroughly, and work through issues from start to finish.
COVID-19 Update: Compass remains open during our regular hours to help you with insurance, financial, legal, and other issues. Call us at 844-COMPASS (844-266-7277) Monday through Thursday, 9 a.m. until 7 p.m. ET and Friday, 9 a.m. until 3 p.m. ET, or email us at firstname.lastname@example.org. You can also start the process today by using our online self-service form.
Compass will have limited hours during the following times so that case managers can spend time with their families:
During these times, we encourage you to fill out our online request form so that your case can be handled by a case manager as quickly as possible upon their return.
Compass's team of case managers can provide free and expert guidance on challenges such as:
While the Compass team is able to help you with many of life's challenges, there may be instances where we have to decline assistance for certain topics outside of our scope of services. For example:
Please note, this list is not comprehensive. The best way to find out if Compass can help you is to connect with a Compass team member today.
Compass case managers are trained and certified in making referrals to community organizations' programs and vetting information about their programs and services. This certification:
Did You Know? The Compass team is composed of 16 staff members who are certified in making referrals, and each Compass case manager participates in more than 64 hours of training annually.
If you or someone you know is affected by a natural disaster, such as a hurricane or flooding, Compass can help identify options for getting help with medications, housing, and other needs. Find out tips for preparing for an emergency situation.
If you need assistance because of a natural disaster or emergency situation, please contact Compass Disaster Team.
Navigating CF is a new, interactive series that helps people with cystic fibrosis, their families, and care teams navigate complex situations related to life with CF. Compass case managers share their knowledge and expertise in a short series of guided, interactive videos intended to help users better understand insurance, financial, legal, and other topics related to life with CF. Start the series today.
Compass is a judgment-free zone. It is likely that your question or concern is something that our Compass case managers have faced before, and if not, we can face it together, because no one has to do it alone. To find out how Compass can help you, call us at 844-COMPASS (844-266-7277), Monday through Thursday, 9 a.m. until 7 p.m. ET and Friday, 9 a.m. until 3 p.m. ET, or email us at email@example.com.
If you would like to request assistance from a Compass case manager to help you navigate complex insurance, financial, legal, or other issues related to life with CF, click on the button below.
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Cystic Fibrosis Foundation
4550 Montgomery Ave.
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Bethesda, MD 20814
800-344-4823 (toll free)
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