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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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.
To help inform the standard of care delivered at accredited care centers, the CF Foundation brings together committees of subject matter experts to write guidelines on topics related to the care of people with cystic fibrosis. Committee members include doctors, nurses, respiratory therapists, dietitians, social workers and people with CF and their families.
Where appropriate, the Foundation may refer to or modify existing guidelines from other professional organizations. The Foundation supports the development of the following types of guidelines:
CF clinical care guidelines are developed for members of the CF community, which includes health care professionals at CF care centers, other health care professionals who provide care to people with CF, as well as people with CF and their families.
Development of CF clinical care guidelines is informed by the CF Foundation's Guidelines Steering Committee. Members of the Steering Committee represent stakeholders from the CF community, including health care professionals who provide care to people with CF, people with CF and their families and CF Foundation staff. The Steering Committee also includes the current chairs of the two standing guidelines committees (Pulmonary and Nutrition) and representatives to the CF Center Committee.
The Guidelines Steering Committee informs the development of CF clinical care guidelines by:
A guideline development committee is convened for each new clinical care topic. Members from the CF community are invited to apply to serve as guideline committee members and are selected based on their expertise on that topic.
Committee members represent different disciplines, care centers and perspectives and are expected to:
Members may not participate on either the Steering Committee or an individual guidelines committee if they have a conflict of interest, which means they have a financial interest in a company with relation to the guideline topic. Conflicts of interest may also occur when a member has an ongoing consulting relationship with a company that produces a drug or device being reviewed. Committee members must submit written statements of real or apparent conflicts of interest. The statements are reviewed and considered by the CF Foundation.
Careful reviews of the CF clinical care guidelines include determining if gaps exist where there are no relevant guidelines or if guidelines are considered out of date. Individuals may also submit topics through their representative on the Center Committee.
The Steering Committee considers and prioritizes topics for guidelines development, based on a number of factors, including whether there are existing guidelines and when they were developed; any controversy or ambiguity on best practices; and the potential impact of guidelines on a specific topic to prompt change in practice and enhance the care of people with CF. The CF community is actively encouraged to provide input on the prioritized list of topics.
Steps for developing CF clinical care guidelines include:
All guidelines are reviewed several years after the release date to determine if an update is needed. In addition, updates may be triggered by a specific event or development, such as new medical research. The CF Foundation Guidelines Steering Committee determines when an update is required.
Guidelines are disseminated in a number of venues and in a number of formats including:
Follow Us On
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)
Sign up for our emails