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.
The latest information on COVID-19 vaccines allocation and how the CF Foundation is advocating in your state.
The Cystic Fibrosis Foundation recognizes the urgency and the importance of ensuring people living with cystic fibrosis have priority access to the COVID-19 vaccines. Throughout this pandemic, the Foundation has engaged with federal and state decision-makers about the dangers of respiratory infections for individuals with cystic fibrosis and the needs of the CF community during this time. The Foundation continues to call on decision-makers to ensure that all vaccine allocation plans provide prioritized access for people at increased risk of serious illness due to COVID-19, including people with CF.
The Centers for Disease Control and Prevention's Advisory Committee on Immunization Practices (ACIP) makes recommendations about vaccine use in the United States, including recommendations about who should receive priority access to COVID-19 vaccines.
The ACIP has issued allocation recommendations regarding the use of the three authorized COVID-19 vaccines produced by Pfizer-BioNTech, Moderna, and Janssen, a subsidiary of Johnson & Johnson. The ACIP recommendations prioritize access to COVID-19 vaccines for people with high-risk medical conditions before the general public and recommend health care providers use clinical judgement in identifying patients whose individual risks factors warrant priority vaccine access. These recommendations support prioritized vaccine access for people with CF.
However, the ACIP recommendations are only one piece of vaccine allocation decisions. States, localities, and health care institutions all have a role in determining when people will have access to vaccines. Vaccine supplies, which are still limited, as well as logistical issues and resource constraints at the state and local level will also affect when someone with CF will be able to receive a vaccine.
While states are encouraged to follow the recommendations from ACIP, final decisions on how vaccines are allocated and distributed are based on a combination of decisions made by federal, state, and local decision-makers, as well as health care institutions. As a result, there are significant differences based on where you live.
For the latest information on the vaccine rollout in your state visit the National Academy for State Health Policy (NASHP) resource that outlines state vaccine allocation plans.
The Foundation believes people with CF need a vaccine distribution strategy that is aggressive, predictable, and adheres to science and medicine. Read our recent statement here.
Logistical issues, resource constraints at the state and local level, and ongoing changes to vaccines allocation guidance are all impacting the vaccine rollout. The speed of vaccination is expected to increase as states receive more resources to support vaccinating large numbers of people and as more vaccines are available.
The CF Foundation continues to advocate both at the federal and state level to ensure people with CF are included along with other high-risk conditions for priority access to COVID-19 vaccines and with all decision-makers to support equitable, timely, and evidence-based vaccine allocation. We also continue to highlight individual stories from the CF community in our advocacy to demonstrate the real-life impact allocation decisions can have.
The Foundation has sent individualized letters to state health officials asking for prioritized access to COVID-19 vaccines for people with cystic fibrosis. Read the letter(s) to your state below.
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Cystic Fibrosis Foundation
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