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.
Cystic Fibrosis Foundation Vice President of Therapeutics Development Dr. Michael Boyle testified today at a hearing in front of the House Energy and Commerce Committee's Subcommittee on Health. He urged members to support H.R. 209, the Ensuring Access to Clinical Trials Act (EACT), which would make permanent a law enabling people to participate in clinical trials without the fear of losing critical benefits.
Published on September 18, 2015
The law that the EACT makes permanent, the Improving Access to Clinical Trials Act (IACT) of 2009, allows people with rare diseases to receive up to $2,000 annually in compensation for participation in clinical trials without that compensation counting towards their Social Security insurance and Medicaid eligibility. The IACT is currently set to expire on October 5.
During his testimony, Dr. Boyle spoke from his experience as a physician at the Johns Hopkins University Hospital about witnessing the devastating effects of CF and the impact of clinical trials in developing life-saving treatments. Dr. Boyle also shared a powerful story of a young man with CF who turned down participating in a clinical trial -- for a drug that was later determined to be the most effective treatment for his type of CF -- because the modest compensation of $750 offered for the trial put his much-needed Medicaid and SSI support into jeopardy. Forgoing compensation is unfortunately not allowed by most hospital review boards and approximately 4 months after declining to enroll, the young man passed away from complications of CF.
In addition to highlighting the need to remove barriers to enrollment for clinical trials, Dr. Boyle also discussed the challenges faced by researchers in recruiting participants to test new medications.
“If the IACT expired and this barrier was reinstated, it would not only affect future trial enrollment, it could cause those with rare diseases who are participating in clinical trials to drop out of these trials for fear of losing their benefits. This would put vital clinical research at risk at a time when the medical needs of the majority of people with rare diseases are not being met,” said Dr. Boyle.
The EACT passed a vote by the Senate on July 16, 2015. It was introduced by Senators Ron Wyden (D-OR), Orrin G. Hatch (R-UT), Edward J. Markey (D-MA), and Sherrod Brown (D-OH) in the Senate and Representatives Lloyd Doggett (D-TX), Tom Marino (R-PA) and Jim McGovern (D-MA) in the House.
The Cystic Fibrosis Foundation is honored to be able to work with the committee and congressional leaders to ensure passage of this bill.
Read Dr. Boyle's EACT testimony
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