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.
Published on November 19, 2014
I have exciting news to share with you about a transformational moment in our shared journey to cure cystic fibrosis.
Today, we announced that our drug development affiliate, Cystic Fibrosis Foundation Therapeutics, has sold its royalty rights to CF treatments developed by Vertex Pharmaceuticals Inc. to Royalty Pharma for $3.3 billion.
The funds from this sale give us a tremendous opportunity to accelerate our mission as never before. We will expand our efforts to help develop lifesaving new therapies and work to ensure that the best possible care and patient programs are available for people with CF and their families. We will also pursue daring new research that we hope will one day lead to a lifelong cure that targets the disease at its genetic level.
Simply put, these new resources will allow us to “dream big” in ways we never could have imagined.
"This was a dramatic example of risk-taking that has paid off in a remarkable way." -Francis S. Collins, M.D., Ph.D., director, National Institutes of Health
The sale is a powerful example of our highly successful efforts in venture philanthropy over many years. We have been pioneers in providing initial investments to pharmaceutical companies to help speed the development of new therapies for people with CF. Funds from any royalties we receive are reinvested into further research and drug development and advance our mission to find a cure. Virtually every CF drug available today was made possible because of our support.
In every decision we make, people with CF and their families remain at the heart of all we do. This transaction will enable us to significantly expand programs and services for people with CF and families throughout our care center network, including those for the growing adult CF population. In addition, the Foundation plans to enhance essential patient resources and education programs that help people with CF access the high-quality, specialized care and treatment they need.
We will continue to collaborate with academic researchers and support industry efforts to target CF from every angle -- from treatments that address the symptoms to mutation-specific therapies. We will convene the best minds in science and medicine to harness cutting-edge technologies and explore strategies aimed at one day eradicating CF at its most fundamental level -- including emerging approaches to repairing the defective CF gene.
This historic milestone would not have been possible without the tireless dedication of the entire CF community. I am deeply grateful for the role you've played in today's news. Together, over the last several decades, we have made enormous strides. Life expectancy has doubled in the last 30 years, and there is more hope and optimism than ever before that people with CF can live longer, healthier lives.
Working as a community, we will continue to forge a path of lifesaving progress that a group of devoted parents started almost 60 years ago. Thanks to you, we are now even better prepared to embrace the opportunities and meet the challenges that lie ahead. Your continued support will allow us to take bolder steps toward our shared goal. I am confident we will get there.
Robert J. Beall, Ph.D.
President and CEO
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