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.
A cystic fibrosis diagnosis must not disqualify an individual from life-saving care.
Last updated on April 24, 2020
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As states and health systems prepare for potential surges in COVID-19 cases and intensified demand for intensive care, many are making decisions about how they will prioritize services and equipment. All human life is valuable, and we are heartbroken to know that clinicians and caretakers on the front lines of this pandemic may be forced to consider unthinkable choices as they care for their patients.
While it is important to give frontline healthcare workers guidance during the crisis, the direction must be rooted in an accurate understanding of the patient's condition and data. There is no evidence to suggest that people with CF cannot make a full recovery from COVID-19.
Alarmingly, several states -- including Louisiana and Utah -- have created regional triage guidance that reflect an outdated understanding of CF that ignores significant improvements in health status and life expectancy in recent years, including for those with advanced lung disease. Many of these guidance documents neglect to take into account the impact of recently approved therapies that treat the underlying cause of disease for most people with CF and have resulted in dramatically improved outcomes for those with advanced lung disease.
We are educating policymakers in those states, and clinicians everywhere, about how CF has changed. We have published a letter in a major medical journal and are working closely with other patient organizations on a national strategy to help ensure these guidance documents do not unfairly disadvantage individuals with serious, chronic medical conditions. In every action we take we are emphasizing that the mere presence of CF should never disqualify someone from receiving lifesaving care.
CF manifests differently in every person and each should be evaluated and triaged for COVID-19 treatment on a case-by-case basis and based on a clinical assessment. Any policy that unnecessarily disadvantages people with CF due to outdated information and perceptions is unacceptable.
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