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 a complex and rapidly changing health care system, we promote policies that help ensure people with cystic fibrosis have access to high-quality, specialized care so they can live longer, healthier lives.
People with cystic fibrosis need adequate, affordable health insurance that allows them to access their daily treatments, visit care centers, and manage unexpected events such as hospitalizations. Our policy work supports expanding access to innovative treatments and therapies and removing barriers to care.
Through Cystic Fibrosis Foundation Compass, we have insight into the real-life impact of health care policies and can identify widespread trends affecting people with CF and their access to adequate and affordable care. It is the collaboration between the Compass and policy teams that enables the Foundation to elevate pervasive issues to the attention of state and federal policymakers with the hope that the system can, one day, work for everyone.
Part of our mission is to ensure access to high-quality, specialized CF care. Towards that goal, the Foundation supports research to better understand the disease and treatments, works to improve CF care at care centers, and advocates for policies that support access to care and treatments.
We educate health insurers, legislators, and other decision-makers about cystic fibrosis, available treatments, the care center network, and the challenges people with CF face in accessing and affording their care. When we learn that people with CF are experiencing barriers to care, we take an evidence-based approach to advocate for coverage and connect public and private payers with local CF experts. Our goal is to build long-term, meaningful relationships with key decision-makers to support evidence-based decision-making that enables people with CF to get the care they need.
In order to access high-quality, specialized care, people with CF need adequate, affordable insurance. Although nearly everyone with CF has public or private health insurance, most individuals and families rely on multiple sources of coverage to address their care needs and the cost burden associated with the disease. Often, this is because health insurance plans are unaffordable or have gaps in coverage for CF care and treatments.
The Foundation strives to ensure access to adequate, affordable coverage so people with CF can take advantage of all the CF care model has to offer and have full access to treatments in the pipeline. We work to protect and expand access to public programs, such as Medicaid and other state health care programs. We advocate for funding for these programs so states can maintain or enhance program eligibility, and we support Medicaid expansion in every state to allow as many people with CF as possible to benefit from the program.
Our work also includes supporting efforts to stabilize insurance markets so people without access to employer-sponsored or public insurance have adequate, affordable coverage options.
We conduct policy research to examine whether health plans and programs, such as Medicaid, Medicare, or health insurance marketplaces, provide affordable, adequate coverage and whether that coverage enables people to seek the care and treatments they need. We do this by partnering with researchers in the CF community to leverage information from the CF Patient Registry and examining policy proposals through the CF lens. The Foundation also works with external researchers on targeted projects. These efforts help inform our policy and advocacy efforts as we continue to work to ensure that all people with CF have access to high-quality, specialized CF care.
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With more than 70 chapters and offices across the country, it’s easy to find and join a local Cystic Fibrosis Foundation chapter near you.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
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