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 how the Cystic Fibrosis Foundation has been working with providers and people with cystic fibrosis and their families to improve access to CF treatments and care.
In 2016, cystic fibrosis care providers across 22 states advocated for people with CF by sharing their clinical expertise with
Medicaid review committees and boards. CF care providers, patient advocates and the Cystic Fibrosis Foundation regularly engaged with state and national policymakers to determine if Medicaid programs will cover new and existing therapies based on clinical evidence, experience and the treatment's effectiveness.
A Virginia care center provider testified in front of the state Medicaid board about the critical importance of
pancreatic enzymes and access challenges to this necessary treatment. Virginia Medicaid then changed its policy, making pancreatic enzymes available to people with CF.
When Georgia Medicaid was reviewing lumacaftor/ivacaftor (Orkambi®) to determine coverage, CF care providers from two centers in Georgia sent letters to the Medicaid board. Georgia Medicaid now lists lumacaftor/ivacaftor as a preferred medication, giving eligible CF patients an avenue to coverage for this breakthrough therapy. Across the country, there are many similar examples of CF care providers going above and beyond their clinical duties to advocate for their Medicaid patients.
These successes are just two of many examples of our larger effort to ensure that everyone in the CF community can get the care they need.
“I am so excited that I got to be a part of this change. It definitely makes me believe more in the power of advocacy.” - Lucy Song, RDN, CNSC
In the 2016
North American Cystic Fibrosis Conference (NACFC) provider survey, 110 care center directors from 39 states weighed in on coverage and access issues and the amount and type of communication they prefer from the CF Foundation.
Center directors overwhelmingly said the most problematic coverage and access issues include:
While most center directors are satisfied with the quality and frequency of communication from the CF Foundation, some noted that greater detail and more frequent updates would be helpful when applicable. Thank you to all the care center directors who participated in the survey. We look forward to advocating alongside the provider community on these important issues.
Meanwhile, CF Foundation
Compass conducted a different survey to understand the prior authorization (PA) process for care centers and the utilization of CoverMyMeds, an online tool to streamline PAs. Most of the 916 respondents were care center coordinators, nurses, physical therapists, respiratory therapists, physicians and social workers.
Of the providers involved in the PA process, 58 percent reported spending 20 percent or more of their time on prior authorizations. The most challenging aspects of PAs included time spent calling in PAs, turn-around times from pharmacies or plans, dealing with appeals and frequency of re-authorizations. Providers also indicated the main effects on patient care were delays in treatment and, for some patients, the inability to get treatment at all.
A majority of respondents said that a web-based tool to streamline the PA process would be useful, and 61 percent of respondents indicated that they already use CoverMyMeds.
Since the open enrollment period began in November 2016, CF Foundation Compass case managers have helped more than 300 people understand their options and select a plan based on their needs and budget. They also helped people with CF navigate questions on issues such as premium levels and generic medications.
Compass is available to help with insurance, financial, legal and other life issues. To contact them, call 844-COMPASS (844-266-7277) Monday through Friday from 9 a.m. until 7 p.m. ET, or email
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Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
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800-344-4823 (toll free)
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