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.
Hearing from diverse voices is critical as we continue our journey to listen, learn, and take action against racism and discrimination.
Published on November 18, 2020
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Cystic fibrosis affects people of many different racial and ethnic backgrounds; however, for many years there has not been adequate recognition or representation of Black individuals and other people of color within the CF community.
As part of its early work to address racism and discrimination, the CF Foundation is working to deepen its understanding of this issue by listening to Black members of the CF community, other people of color with CF, and leading researchers who are focused on health disparities. In those conversations, sobering evidence affirms that race impacts every aspect of an individual's experience with CF:
Throughout our discussions, Black members of the CF community have shared a need to build trust with both the Foundation and other members of the CF community. They have expressed concern about the lack of representation across a range of settings, and report upsetting experiences in healthcare settings about the ways their race impacts their care.
As we begin to take action guided by these findings, it is critical that we hear from diverse voices to better understand the unique needs and perspectives of people of color within the CF community.
If you are interested in helping to shape the Foundation's efforts to create an equitable and inclusive community for all people with CF, we encourage you to complete this interest form. As part of this effort, the Foundation is also recruiting individuals to join a working group that will focus on understanding how racism affects the Black CF community, including its impacts on research and care.
We feel great urgency to confront the challenges facing people of color across the CF community; we are also committed to taking steps that will result in meaningful, lasting change.
If you are not a person of color but would like to be involved with this work and other Foundation initiatives, please join Community Voice. For other questions, please contact firstname.lastname@example.org.
The Foundation is grateful to Terry and Michele Wright, founders of The National Organization of African Americans with Cystic Fibrosis, as well as Raeshaun Jones, founder of Inhale Melanin Exhale Power, for their input throughout our early listening efforts and guidance to ensure we take the right first steps.
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