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.
In this issue of Network News, learn about the Cystic Fibrosis Foundation's new five-year strategic plan, how one care team is sustaining mental health care by seeking multiple funding sources, how patients and families are using quality improvement to improve coproduction of care, how one care team improved lung transplant referral, how the CF Foundation is working for elexacaftor/tezacaftor/ivacaftor coverage, and more.
CF Foundation Launches Strategic Plan
The CF Foundation is pleased to announce the launch of its strategic plan, which establishes key priorities for next five years as we advance our Path to a Cure, meet emerging challenges in care, and explore new ways to partner with and support the CF community.
Sustaining Mental Health Care: Seeking Several Funding Streams
The care team at Children’s Healthcare of Atlanta and Emory University used a value-based argument to gain support from administration to explore long-term institutional funding for mental health care while drawing on philanthropic funding.
Patient and Family Partners Use QI Methods to Increase Program-Level Co-Production
Through distributed leadership, quality improvement science, and timely data capture, the Cystic Fibrosis Learning Network makes it easier for clinicians and people living with CF to collaborate to improve care.
UNMC Team Decreases Need for Crisis Lung Transplant Evaluations
Implementing advanced care planning has helped the adult care team at the University of Nebraska Medical Center reduce lung transplant evaluations resulting from health crises.
CF Foundation Working to Ensure Trikafta Coverage and Providing Tools for Clinicians
An update on Trikafta™ coverage and new tools for clinicians to use in correspondence with payers.
View a Recent Webinar to Catch Up on Research Progress
A recording of the recent webinar, Research Progress: The Community’s Voice in Action, is now available to view online.
Join Us on April 16 for ResearchCon 2020: CFTR Science and Genetic-Based Therapies
In partnership with researchers, clinicians, and community members, the Cystic Fibrosis Foundation will host the second annual ResearchCon for anyone with a personal or professional connection to CF.
Help Ensure We Hear From Underrepresented Populations
Patients and families are partnering with researchers and clinicians to advance CF care and research. In 2020, new projects will require insights from underrepresented populations in the CF community.
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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