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.
More than 4,600 cystic fibrosis researchers and health care professionals gathered Oct. 27 - 29 in Orlando for the 30th annual North American Cystic Fibrosis Conference. Recordings of the three plenary sessions are now available online.
Published on November 4, 2016
Speakers: Eric Sorscher, M.D. and Mitchell Drumm, Ph.D.
Eric Sorscher, M.D., the Georgia Research Alliance Eminent Scholar and Hertz Professor in Cystic Fibrosis Research at Emory University in Atlanta, provided an overview of the development of potential treatments that would target the underlying cause of cystic fibrosis and its symptoms. If clinical trials for the second generation of CFTR modulators are successful, nearly 95 percent of people with CF will have a drug that targets the defective CFTR protein that causes their symptoms. For the remaining 5 percent of people with CF who do not produce any CFTR protein, researchers are testing compounds and exploring other potential treatments to ensure that no one is left behind. Dr. Sorscher said that working on treatments that reduce excessive inflammation, fight chronic infections and improve airway clearance remain top priorities until a cure can be found.
Mitchell Drumm, Ph.D., a professor of pediatrics and genetics for Case Western Reserve University School of Medicine, spoke about gene editing and other approaches to a one-time CF cure.
Read more on the CF Community Blog.
Watch plenary 1. (Duration: 1 hour, 37 minutes)
Speakers: Patrick Flume, M.D., Kris De Boeck, M.D., Ph.D. and Patricia Burks, M.A., R.N., C.C.R.C.
Patrick Flume, M.D., professor of medicine and pediatrics at the Medical University of South Carolina, said it is going to take a tremendous team effort between doctors, researchers and people with CF to advance new therapies through the more than 50 clinical trials underway. Because there are less than 35,000 people with CF in the United States, it is difficult to recruit enough people who meet all the eligibility criteria for a trial, he said.
Kris De Boeck, M.D., Ph.D., director of the Pediatric Pulmonary and Infectious Diseases program at the University of Leuven in Belgium, explained how the CF Foundation is helping to expand the pool of people who can enroll in trials by improving the performance of clinical trials in the United Kingdom, Europe and Australia.
Patricia Burks, M.A., R.N., C.C.R.C., director of Clinical Trial Affairs at the CF Foundation, moderated a panel discussion with three members of the CF community to discuss why they think it is important that everyone with CF has the opportunity to participate in clinical trials.
Watch plenary 2. (Duration: 1 hour, 9 minutes)
Speaker: Wayne Morgan, M.D.
Wayne Morgan, M.D., a pediatric pulmonologist at the University of Arizona in Tucson, talked about the connection between CF care and the Patient Registry, and introduced a new way for people with CF, along with their families, to help shape the research conducted using the Registry. Dr. Morgan reviewed the role of the Registry in improving our understanding of cystic fibrosis, the care of people with CF and opportunities to improve care. He also introduced a new initiative called the Insight CF Registry Research Project, in which anyone in the CF community can submit a research question that can be answered by mining data in the Registry.
Watch plenary 3. (Duration: 1 hour, 6 minutes)
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