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.
Topics in this issue include How the Wisconsin Team Used Data and the Voice of Patients and Families to Improve Care, the Patient Registry's CF by the Numbers, Stories about Partnerships for Sustaining Daily Care, and an update on Clinical Practice Guidelines.
How the Wisconsin Team Used Data and the Voice of Their Patients and Families to Improve Care
The pediatric care team from the University of Wisconsin-Madison combined the Experience of Care Survey, the quality improvement process and the voice of their patients and families to influence hospital administration to improve the delivery of care.
CF by the Numbers
The Cystic Fibrosis Foundation Patient Registry allows our community to examine trends over time. In this issue, we examine data trends of the relationship between lung function and nutritional outcomes.
Partnerships for Sustaining Daily Care: Learning Through Stories
Trusting, collaborative partnerships among care teams, patients and families are critical to helping manage daily cystic fibrosis care. Through storytelling, our community will learn about the key elements supporting these relationships.
CF Health Check: Sharing Data to Enable Informed Partnerships in CF Care
An innovative patient portal called CF Health Check will allow people with cystic fibrosis, their families and their care teams to access shared data through a series of digital dashboards to inform care.
Winter 2017 Quality Improvement Update
The Cystic Fibrosis Foundation supports quality improvement (QI) initiatives to advance the quality of cystic fibrosis care. The following are QI updates for 2017.
Winter 2017 Clinical Practice Guidelines Update
The Cystic Fibrosis Foundation develops clinical practice guidelines to help guide the care of individuals with cystic fibrosis. The guidelines are based on the available medical evidence and consultation with experts on best practices. The following are updates from the clinical practice guidelines committees.
Stock Up on CF Foundation Educational Resources!
The Cystic Fibrosis Foundation offers free educational resources on a variety of topics in many formats to accommodate different learning styles. Learn about how to obtain resources for your CF Center.
Clinical Research Referral Support Program
The Clinical Research Referral Support Program (CRRSP) helps care centers offset the time and effort required to identify and refer patients for enrollment in clinical trials.
Winter 2017 Community Partnerships Update
In 2017, the Community Partnerships Department will launch and expand programs that bring the perspective of people with cystic fibrosis and their families into all Cystic Fibrosis Foundation activities to support and partner with people touched by CF every day.
Winter 2017 Policy and Access Update
Learn how the Cystic Fibrosis Foundation has been working with providers and people with cystic fibrosis and their families to improve access to CF treatments and care.
Health Care Reform and Advocacy Efforts
With health care reform as a top priority for the incoming administration, the Cystic Fibrosis Foundation is working to ensure that any reforms put into place recognize the unique needs of people living with cystic fibrosis.
Every teamMATE Brings Us Closer to a Cure
You are invited to become a Cystic Fibrosis Foundation teamMATE by choosing opportunities that best match your interest and skills.
We are proud to remember Barbara Chatfield, Fr. John Mangos and Mary Rose as champions for cystic fibrosis and for their contributions to the CF community. Their work made a tremendous difference in the lives of people with CF.
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
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Bethesda, MD 20814
800-344-4823 (toll free)
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