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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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.
Find previous issues of Network News here. The newsletter is published to help the multidisciplinary teams at our care center networks remain informed about our collective efforts to improve the lives of people living with cystic fibrosis and their families.
Network News: January 2018
Kick off 2018 with Network News to learn more about a new study on health insurance, executive summaries of clinical guidelines, Great Strides, and updates from the North American Cystic Fibrosis Conference (NACFC).
Network News: NACFC 2017
In this issue of Network News, learn more about the upcoming North American Cystic Fibrosis Conference (NACFC), open enrollment, and the latest in quality improvement.
Network News: August 2017
Topics in the August 2017 issue of Network News include partnering in cystic fibrosis care, newly published clinical care guidelines, and new educational resources to share with patients and families.
Network News: May 2017
Read about the Annual Cystic Fibrosis Nutrition and Social Work Consortium award recipients, March on the Hill for Adequate, Affordable CF Care, and the 2017 Therapeutics Development Network (TDN) Spring meeting.
Network News: Winter 2017
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.
Network News: Fall 2016
Read about the latest drug expansion, Patient Registry research, Supporting Partnerships for Sustaining Daily Care, and the 2016 North American CF Conference (NACFC) in Orlando.
Network News: Spring 2016
The spring 2016 issue of Network News features coverage of a pilot study to encourage open communication between people with cystic fibrosis and clinicians and the work of the CF Foundation’s Community Partnerships with people with CF and their families.
Network News: Winter 2016
Highlights of the winter 2016 issue of Network News include a story about the Patient and Family Experience of Care Survey, a message from new CEO and president Preston W. Campbell III, M.D. and a report about the launch of CF Foundation Compass.
Network News: Fall 2015
Network News: Fall 2015 focuses on the North American Cystic Fibrosis Conference, the Foundation's “Living Today, Adding Tomorrows” video series and the Dartmouth Institute's selection of sites for its “Coproduction of Care” dashboard.
Network News: Summer 2015
Network News: Summer 2015 features the work of care teams as they prepared for the publications of recommendations for depression and anxiety screening, the publication of the sixth edition of the Managing Cystic Fibrosis-Related Diabetes manual and an update on the Care Model of the Future.
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.
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Bethesda, MD 20814
800-344-4823 (toll free)
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