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.
Learn more about the Cystic Fibrosis Foundation's Code of Ethics.
All trustees, advisors, staff, and volunteers of the Cystic Fibrosis Foundation (“Foundation”) act with honesty, integrity, and openness in their dealings as representatives of the Foundation and are expected to comply with this Code of Ethics as applicable to their role with the Foundation. The Foundation promotes a working environment that values respect, fairness, and integrity.
The Foundation has a clearly stated mission and purpose, approved by the board of trustees, in pursuit of the public good. All of its programs support that mission to cure cystic fibrosis and to provide all people with the disease the opportunity to lead full, productive lives by funding research and drug development, promoting individualized treatment, and ensuring access to high-quality specialized care. All who work for or on behalf of the Foundation understand and are loyal to that mission and purpose. The mission is responsive to the constituency and communities served by the Foundation and of value to the society at large.
The Foundation has a board of trustees that is responsible for setting the mission and strategic direction of the Foundation and for oversight of the finances, operations, and policies of the Foundation. The board:
The Foundation is knowledgeable of and complies with all applicable laws, rules, and regulations.
The Foundation manages its funds responsibly and prudently. The Foundation:
The Foundation provides comprehensive and timely information to the public, the media, and stakeholders and is responsive in a timely manner to reasonable requests for information. All information about the Foundation fully and honestly reflects its policies and practices. Basic informational data about the Foundation, such as the Form 990 and audited financial statements are posted on the Foundation's website or otherwise available to the public. All solicitation materials accurately represent the Foundation's policies, practices, and programs. All financial, organizational, and program reports are complete and accurate in all material respects.
The Foundation regularly reviews program effectiveness and has mechanisms to incorporate lessons learned into future programs. The Foundation is committed to improving its programs, including, without limitation, research, care, and education, and to continually improving organizational effectiveness. The Foundation is responsive to changes in its field of activity and is responsive to the needs of its constituencies.
The Foundation is committed to inclusiveness and diversity in its trustees, advisors, and volunteers. The Foundation takes meaningful steps to promote inclusiveness in its hiring, retention, promotion, board recruitment, and engaging its constituencies. The Foundation complies with federal and state equal employment opportunity laws and maintains a policy of promoting diversity.
When raising funds, the Foundation is truthful in its solicitation materials. The Foundation respects the privacy concerns of individual donors, expends funds consistent with donor intent, and discloses important and relevant information to potential donors.
In raising funds from the public, the Foundation respects the rights of donors:
The Foundation offers competitive awards and grants to members of the research and medical community who help advance cystic fibrosis research and care. The Foundation offers grants and awards for cystic fibrosis research and for professional development and training. The Foundation strives for constructive relationships with grantseekers based on mutual respect and shared objectives, including clear communication, compliance with applicable rights of privacy and laws, and in the spirit of the highest integrity.
To accomplish its mission, the Foundation engages with biotechnology and pharmaceutical companies and other healthcare professionals that are advancing cystic fibrosis-related research, therapies and devices (“Industry”). In addition to ensuring the Foundation complies with applicable laws and regulations, the Foundation has policies that govern its interactions with Industry to ensure its commitment to its community and its high ethical standards remain uncompromised. The Foundation regularly evaluates potential and ongoing interactions with Industry to ensure they comply with regulatory guidelines as well as the Foundation's internal standards for integrity and ethical behavior.
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Cystic Fibrosis Foundation
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800-344-4823 (toll free)
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