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.
Learn more about the latest resources available to you and watch archived town halls and webinars that you may have missed.
To support people living with cystic fibrosis, their families and CF care teams and others who are involved in CF clinical care and research, the CF Foundation provides many educational resources both online and as physical hard copies.
An Introduction to Cystic Fibrosis for Patients and Their Families, 6th Edition, discusses the basics of CF, how it affects the body, daily management and resources for those newly diagnosed with CF and their families. The electronic versions of both the
Spanish books are available on CFF.org.
Hard copies of the book in both English and Spanish can now be ordered directly from the CF Foundation.* To order, email
firstname.lastname@example.org with the title of the resource, An Introduction to Cystic Fibrosis for Patients and Their Families, 6th Edition, the quantity you'd like, your name, street address (including room/building number) and phone number.
*Please note: Aptalis/Allergan is no longer the distributor. All orders should be placed through the CF Foundation.
The CF Foundation has produced several educational materials to help support care teams with the implementation of the
guidelines for the screening and treating of depression and anxiety. Experts from the CF community, a parent and an adult with CF, were instrumental in helping us develop these tools.
Depression, Anxiety and Cystic Fibrosis: A Guide for Clinicians. We hope you will use this tool to reference the algorithms from the published guidelines. It also highlights key recommendations and briefly explains the reason why a referral pathway, screening and treatment are important.
For patients and families:
Depression, Anxiety and Cystic Fibrosis: What the Guidelines Mean for You. This resource is meant for you to distribute to your patients and families to help them understand the questionnaire they are being asked to complete for screening and why this is important. It is available in
Spanish electronically. Hard copies of the English version are also available. To order, email
email@example.com with the title of the resource, Depression, Anxiety and Cystic Fibrosis: What the Guidelines Mean for You, the quantity you'd like, your name, street address (including room/building number) and phone number.
Care Schedule for Newborns to 5-Year-Olds with CF is designed to provide a quick visual reference of the clinical care tables from the
2009 Infant Care Guidelines and recently published
2016 Preschool-Aged Care Guidelines.
Town halls and webinars are other communication channels used to inform the Care Center Network about new information and published guidelines. The feedback we have received about these sessions has been very positive.
If you are not able to attend the live webcast, a link is provided for you to view at your convenience. Here are the links to the sessions that have been held this year.
Compass Town Hall
: On January 13, viewers learned about the roll out of Compass and how it will support care teams, individuals with CF and families.
Strategic Investment Taskforce Town Hall
: On March 30, Drucy Borowitz and Dick Simon announced the ideas obtained from the CF community to financially support care centers.
: Stephanie Davis and Thomas Lahiri were featured on an April 28 webinar to highlight the preschool clinical practice guidelines, which were published in April. A Clinical Care Schedule for Newborns to 5-Year-Olds with CF was developed to support the implementation of those guidelines.
Patient and Family Experience of Care Survey
: Care teams who are collecting data from this survey were invited to join this webinar on June 23. Karen Homa and Jeff Paliwoda shared updates about data collection, reporting and results.
Clinical Trials Town Hall
: There are more clinical trials than ever before, and care teams are encouraged to share information with all who are eligible. Mike Boyle, Christina Román and Patty Burks shared information about the new
Clinical Trial Finder tool.
PowerPoint slides from all sessions are available in the “Town Hall and Webinars” folder located in the “Resources” tab on PortCF.
For more information contact Paula Lomas at
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