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.
Advocating on behalf of friends and family members with cystic fibrosis, more than 120 CF Foundation volunteers came together in the nation's capital to speak with their elected officials on behalf of friends and family members affected by the disease.
Published on April 3, 2015
As part of the CF Foundation's annual March on the Hill, volunteers from 38 states attended more than 270 meetings with members of Congress to tell their elected officials what they could do to help the cystic fibrosis community find a cure and improve the lives of people with the disease.
“Advocacy plays a vital role in the Foundation's mission to find a cure for cystic fibrosis,” said Robert J. Beall, Ph.D., president and CEO of the Foundation, on the morning of the event. “By building relationships with elected officials, we create champions in Congress for the CF community that can help move us one step closer to making important policy changes a reality.”
In addition to sharing their personal CF stories and highlighting the needs of people with CF, volunteers asked their congressional representatives to co-sponsor the Ensuring Access to Clinical Trials Act. If passed, the act will make permanent a law that allows individuals with rare diseases to receive compensation for participating in clinical trials without fear of losing vital health benefits through Social Security and Medicaid.
Volunteers also pushed for greater funding for the National Institutes of Health (NIH) and the Food and Drug Administration (FDA), which is crucial to the development of new, specialized treatments and therapies for people with cystic fibrosis.
Representative Tom Marino (R-PA), co-chair of the Congressional Cystic Fibrosis Caucus, thanked volunteers for their efforts at the opening reception, emphasizing the importance of sharing powerful, personal stories about CF with elected officials.
Senator Edward Markey (D-MA) and Representative John Fleming (R-LA) also shared inspirational words with the group of advocates, discussing the importance of their efforts in educating the congressional community about cystic fibrosis and inspiring elected officials to help make a difference.
“I am so grateful to be able to come to Washington, D.C. and advocate for my granddaughter and all people living with CF,” said volunteer Reva Ayala of Texas. “It's empowering to know that by meeting with members of Congress, I and other advocates are able to help make a lasting impact on CF families across the country.”
Learn more about how you can be involved in advocacy, or contact us at
Learn more about how to set up a meeting with your elected officials to talk about how they can support the CF community.
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