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.
As Congress weighs budget appropriations, we look at long-term funding for the National Institutes of Health. We decided to sit down with the Foundation's senior vice president of research affairs to learn more about why the work being done at NIH is so important in the search for a cure for CF and other serious, rare diseases.
December 11, 2015
Dana Curry's Motivational Tips
To Tell or Not to Tell?
We talk a lot about the cystic fibrosis community: the individuals fighting the disease, their families and care teams. In today's blog, we're going to talk about CF researchers in our community and why they're concerned about decreases in federal funding for the National Institutes of Health (NIH). Adjusted for inflation, NIH receives 22 percent less funding than it did in 2003, which is concerning to the entire scientific community.
William R. Skach, M.D., our senior vice president of research affairs, is well-versed on the challenges of NIH funding. He hosted a panel discussion on December 8 on Capitol Hill to educate members of Congress and legislative staff on advances in CF treatments and personalized medicine that have changed the lives of those with the disease.
The panel, which included representatives from government and industry and an individual with CF, also discussed the importance of NIH research in forming the bedrock of advances in CF treatment. Of particular interest was the importance of providing robust funding for NIH to support basic research.
We sat down with Dr. Skach to learn more about why the work being done at NIH is so important in the search for a cure for CF and other serious, rare diseases.
How do NIH's research efforts complement or interact with what the CF Foundation is doing?
NIH provides the foundational support for basic investigation laboratories to survive, develop and flourish. These laboratories explore many different areas of science, and the CF Foundation has been very successful in identifying the researchers who are working on critical problems that we think are important for CF.
We can take the discoveries those scientists have developed and then apply that expertise to CF. It is like building a house on a solid foundation. NIH is critical to setting the stone in place. Then, private foundations like the CF Foundation and others can come in and erect the structures. This partnership has played out time and time again and is really the basis for many of the success stories in modern medicine.
The true basic studies required to understand the underlying biology are most often supported through NIH-funded research. Over the decades, this has had enumerable benefits for disease-based treatment, especially in the CF community, and also the types of researchers we're able to recruit and the technologies we're able to bring to CF.
Why is the work being done at NIH so important in the fight against CF?
NIH funding is critical because it is the main supporter of research that contributes to our knowledge of the underlying biology of cystic fibrosis. Often, NIH-supported scientists are not studying CF specifically, but they are learning how cells and proteins work and how fluids and molecules move through tissues in a more general sense.
NIH researchers ask fundamental questions that are incredibly important to CF research even if they may not directly relate to CF. The knowledge they gain and the discoveries they make can be applied to cystic fibrosis and hundreds, if not thousands, of other diseases.
NIH also plays a large role in developing a well-trained, well-prepared scientific workforce, which is essential to the success of medical research. Without continued investment in NIH, we couldn't move forward on the path to new cystic fibrosis discoveries.
Can you tell me more about basic research and why it is especially important? Why couldn't CF researchers study these things on their own?
That's a great question, and the best answer is truly that we just can't predict what discoveries will come from basic research. A great example is gene editing. Gene editing got its start partially in the commercial yogurt industry because of the need to develop bacteria that could resist certain viral infections.
This is how so much of basic research works. The enzymes that are now being used to edit genomes started out as nothing more than a scientific curiosity. It was only years later that someone recognized this technology could actually be used for other things. Now it's revolutionized many aspects of medicine, including potential treatments for cystic fibrosis.
It takes an agency with resources and a broad mission to focus on and study the fundamental principles. NIH does that on a regular basis. The CF Foundation can take these discoveries, direct them and move them toward CF.
This role is unique to NIH, and it is a major reason why America has become the major biotech and biomedical research leader in the world.
Congress is currently finalizing the federal budget for NIH and other agencies. Encourage your member of Congress to support funding for NIH today.
Public Policy Specialist, Cystic Fibrosis Foundation
As a public policy specialist at the Cystic Fibrosis Foundation, Rachel focuses on federal policies from Congress and federal agencies such as the U.S. Department of Health and Human Services, the National Institutes of Health and the Food and Drug Administration. She reviews and analyzes laws and regulations to assess how they may affect CF research and access to care for those with CF, and works with her team to ensure the strong voice of the CF community is heard in Congress. Rachel hails from New Orleans, La., and prior to joining the Cystic Fibrosis Foundation, she studied behavioral genetics and creative writing at Washington University in St. Louis.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.
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