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.
On December 8, The Cystic Fibrosis Foundation, in collaboration with the Congressional Cystic Fibrosis Caucus and its co-chairs, U.S. Reps. James McGovern (D-Mass.) and Tom Marino (R-Pa.), presented a congressional briefing on cystic fibrosis and precision medicine.
Published on December 11, 2015
William R. Skach, M.D., senior vice president for research affairs at the CF Foundation, served as the moderator for the event, Precision Medicine & Cystic Fibrosis: Using Genetics to Treat Disease, which educated members of Congress and their staff on the role of precision medicine and genetically-targeted treatments and therapies.
The panelists included Eric D. Green, M.D., Ph.D., director of the National Human Genome Research Institute (NHGRI) at the National Institutes of Health (NIH); Noreen Roth Henig, M.D., chief development officer of ProQR Therapeutics NV; and Mara Cray, a 19-year-old woman with CF.
During welcoming remarks, Representative McGovern shared how he became involved in the cause after learning that a friend's son had cystic fibrosis. He highlighted the role of precision medicine as an important approach to finding treatments for CF and encouraged the congressional staff members in attendance to ask their members to join the CF Caucus. Representative John Fleming (R-La.) joined him to reiterate the need for funding for CF research and shared his own personal connection to the disease.
Dr. Skach highlighted the story of cystic fibrosis and the great strides made by the CF Foundation to combat the disease. He cited the development of ivacaftor (Kalydeco®), as transformational and a model for the type of treatments that are possible through precision medicine. He called for continued and increased funding of the NIH to maintain a well-educated biomedical workforce to advance the work of this technology and new frontier.
“Without the NIH, we simply would not have made progress,” explained Skach.
Dr. Green informed the audience about the role that genomics has played in CF research and how the ability to look at an individual's genetic “blueprint” has helped tailor treatments. He described CF research as being on the “leading edge” of precision medicine.
Nineteen-year-old Mara Cray outlined the daily life and struggles that a person born with CF faces. She relayed her own experiences of being too sick to continue high school when her health started to rapidly decline. But her life changed dramatically after she started taking lumacaftor/ivacaftor (Orkambi™), during a clinical trial.
“It stopped my health decline in its tracks,” Cray said. “I was able to start planning my life and my future again.”
Dr. Henig outlined the work ProQR Therapeutics is doing in emerging therapeutics and its commitment to fighting cystic fibrosis. She highlighted CF as a top priority for the company.
The panelists emphasized the need to continue funding for basic research, which serves as the bedrock for precision medicine. The key takeaway was that knowledge builds on top of itself and that everyone will eventually benefit from basic science research.
To learn more about the advocacy efforts of the CF Foundation, please visit our advocacy page to find out how you can get involved.
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