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.
The Cystic Fibrosis Foundation's successful business model was at the center of a congressional briefing in Washington, D.C., today, which focused on strategies for jump-starting drug development for rare diseases.
Published on June 14, 2011
Robert J. Beall, President and CEO of the CF Foundation, spoke at a congressional briefing on the need to accelerate development of new drugs for rare diseases, along with Vertex Chairman and CEO Matthew W. Emmens (left) and Rep. Edward Markey (center).
The Foundation has nearly 30 drugs in development or already on the market for treating CF, a rare, genetic disease. It has created these opportunities by offering financial incentives to biotech companies to entice them to pursue CF drug development, said Robert J. Beall, Ph.D., president and CEO of the CF Foundation.
At the event, National Institutes of Health Director Francis Collins, M.D., Ph.D., noted that 25 million Americans suffer from rare diseases. “How can we take this wonderful CF Foundation success and spread it around?” he asked.
To achieve this goal, Collins has proposed a new NIH initiative called the National Center for Advancing Translational Sciences. It will focus on taking scientific discoveries and promoting the translation of this knowledge into drugs for people in need, using some of the same strategies created by the CF Foundation.
The briefing highlighted a collaboration between the CF Foundation and Vertex Pharmaceuticals, Inc., which has spawned two potential oral drugs that treat the root cause of CF - a historic turning point. All therapies available to patients today can only treat the symptoms of the disease. One of these potential drugs, VX-770, completed Phase 3 clinical trials this spring, with very promising results. Vertex will submit a New Drug Application to the FDA for VX-770 later this year.
Vertex Chairman and CEO Matthew W. Emmens and Vertex Vice President and Cystic Fibrosis Franchise Lead Eric Olson, Ph.D., spoke at the briefing, along with Reps. Edward Markey (D-MA), Brian Bilbray (R-CA), Tom Marino (R-PA) and Jim McGovern (D-MA).
“We've come a long way” in treating cystic fibrosis, said Markey, who is co-chair of the Congressional Cystic Fibrosis Caucus. He wrapped up the briefing by saying: “It was a perfect hour of optimism.”
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