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.
Robust funding for the National Institutes of Health helps ensure innovation in basic research and a full pipeline of cystic fibrosis therapies. A well-resourced U.S. Food and Drug Administration helps advance these therapies, making sure that they are safe and effective.
The Cystic Fibrosis Foundation has a long history of advocating for robust funding for the National Institutes of Health (NIH) and the U.S. Food and Drug Administration (FDA). These two organizations play a critical role in advancing new therapies for
cystic fibrosis and ensuring that all CF therapies are both safe and effective.
The CF Foundation builds on the work of the NIH and FDA by providing additional resources for each stage of the research process. This collaborative approach has led to the approval of 13 CF therapies, including three that treat the underlying cause of
A half-century ago, there was no effective treatment for CF, and little was known about the disease. In 1989, Francis S. Collins, MD, PhD, who is now the director of the NIH, co-identified the CF gene.
In the more than three decades since, incredible progress has been made in the understanding of CF and development of therapies for people living with CF. These scientific advances, along with a comprehensive approach to care, are changing the face
of the disease.
The NIH provides the foundational support for basic science research laboratories to survive, develop, and flourish. Discoveries at NIH have helped support our knowledge of the biology of CF and how the disease works, contributing to the fundamental research
that fuels the development of future therapies for people with CF.
Today, the CF Foundation works closely with the NIH to support basic science and clinical research for CF. With the help of clinical
trial volunteers, the CF Foundation and its research partners are accelerating the search for a cure. Through our policy work, we help ensure that NIH-funded research continues to deepen our knowledge of CF.
A well-resourced FDA helps ensure new drugs are safe and effective and are swiftly reviewed to get them into the hands of people with CF as soon as possible. The CF Foundation’s work with policymakers helps ensure that the FDA proactively seeks meaningful
input from patients, providers, and researchers when reviewing applications for rare disease treatments. Through our policy work, we help ensure that the FDA can accelerate drug review timelines while maintaining the highest standards of approval.
Through the innovative and extraordinary work of the NIH and the FDA, more people than ever before have viable treatments for CF. To date, there are 13 CF therapies approved and many more are part of the Drug Development Pipeline.
Major milestones of the pipeline include:
The CF Foundation is committed to discovering treatments and therapies for the 7 percent of people with CF who have nonsense
and rare mutations that won't respond to modulators. In 2016, we launched the Nonsense and Rare Mutations Research and Therapeutics Initiative to help advance research so that one day, all people living with CF have safe and effective therapies. Alongside
the CF community, we promote policies that drive the CF drug and research pipeline forward.
Our progress in advancing research and drug policy has been championed by our volunteer advocacy community. Achievements and milestones include:
President Obama spoke on the Precision Medicine Initiative
Mary Dwight, senior vice president of policy and advocacy at the CF Foundation, and CF advocate Melissa Shiffman accept the Paul G. Rogers Distinguished Organization Advocacy Award from Research!America.
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