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 event, held at the U.S. Capitol Visitor Center, aimed to educate members of Congress on the impact of the proposed rule to expand short-term insurance plans on people with serious and chronic health conditions.
Published on April 13, 2018
On April 11, the Cystic Fibrosis Foundation joined the American Heart Association, the Leukemia and Lymphoma Society, American Lung Association, March of Dimes, and other patient advocacy organizations to host a congressional briefing on the short-term insurance rule proposed by the Trump administration. More than 75 people attended the event, held at the U.S. Capitol Visitor Center.
A recent proposal by the Trump administration on short-term, limited-duration health plans would extend the maximum length of these insurance policies from 90 days to nearly one year. These policies were meant to be a short-term solution, not to provide long-term comprehensive coverage. Short-term health plans are not required to comply with critical consumer protections, which means that insurers can impose lifetime and annual caps on coverage, limit what services are covered, and charge people with pre-existing conditions higher premiums or deny them coverage completely.
The expansion of short-term insurance policies would likely divide the marketplace into plans for healthy people and plans for sick people, driving up costs for people with cystic fibrosis who already experience a significant financial burden caring for their disease.
“Short-term insurance plans do not offer meaningful coverage for anyone, and expanding the use of these types of plans will cause health care costs to rise for people who rely on the individual marketplace,” said Mary Dwight, senior vice president of policy and advocacy at the Foundation. “We call on Congress to urge the administration to withdraw the short-term rule and move forward with a solution that enables the individual marketplace to work both for people who are healthy and for those who have expensive or chronic diseases, such as cystic fibrosis.”
The panel discussion was moderated by Cynthia Pellegrini, senior vice president of public policy and government affairs at March of Dimes. The panelists included Dwight; Timothy Jost, emeritus professor at Washington and Lee University School of Law; Kris Haltmeyer, vice president, legislative and regulatory policy at Blue Cross Blue Shield Association; and Sam Bloechl, an adult with non-Hodgkin lymphoma. Bloechl had a short-term insurance plan when he was unexpectedly diagnosed with cancer and was subsequently denied coverage for his care because his policy did not cover pre-existing conditions.
The individual insurance market is the source of insurance coverage for some people in the cystic fibrosis community. Finalizing the short-term rule could mean that the cost of premiums for these families will increase.
“We have relied on the individual marketplace for health insurance for three years,” said Ginger Birnbaum, mother of a child with CF. “Currently, we feel at a tipping point in affording our coverage and don't know how we will sustain another spike in premiums.”
To stay informed about the Foundation's advocacy work and get involved, text “FIGHTCF” to 52886 or sign up for the Foundation's Advocacy Alerts.
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