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.
Expanded Research Lab to Apply Latest Scientific Advances -- Including Stem Cell Research and Gene Editing -- to Accelerate New Treatments for CF
Published on September 16, 2016
BETHESDA, Md., Sept. 16, 2016 -- The Cystic Fibrosis Foundation today announced the official opening of a new, one-of-a kind research facility in Lexington, Mass. Operated by Cystic Fibrosis Foundation Therapeutics Inc. (CFFT), an affiliate of the CF Foundation, the lab is designed to identify and test potential therapies for rare and common mutations of cystic fibrosis, with the ultimate goal of bringing new treatments to people living with the disease.
CF is a complex, fatal disease that affects about 30,000 adults and children in the United States and 70,000 people worldwide. It is caused by more than 1,700 genetic mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene. Although the majority of individuals with CF have at least one copy of the most common mutation, 5 percent of people carry only nonsense and other types of rare mutations that do not respond to existing drugs -- known as CFTR modulators -- that treat the underlying cause of the disease.
“Our goal with the new research lab is to speed the development of new treatments for all people with cystic fibrosis,” said William Skach, M.D., senior vice president for research affairs at the CF Foundation. “The lab will provide a unique bridge to fill the gap between academic discovery and the pharmaceutical industry in advancing CF therapies.”
Building on CFFT's expertise in cell culture, gene editing and stem cell research, the lab's 25 scientists will spearhead a new initiative to collect and grow cells from people with CF who have nonsense and other rare mutations. These cells will be critical for identifying treatments for rare mutations, and will be made available to academic institutions and pharmaceutical companies to expedite the development of new medications.
The team also will continue to screen promising compounds in order to identify the ones that hold the greatest potential for correcting CFTR mutations.
The Cystic Fibrosis Foundation is the world's leader in the search for a cure for cystic fibrosis. The CF Foundation funds more cystic fibrosis research than any other organization, and nearly every CF drug available today was made possible because of CF Foundation support. Based in Bethesda, Md., the CF Foundation also supports and accredits a national care center network that has been recognized by the National Institutes of Health as a model of care for a chronic disease. The Cystic Fibrosis Foundation is a donor-supported nonprofit organization.
Laurie Fink, national director of media relations: 301-841-2602; email@example.com
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