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.
Scientists around the world agree that global innovation is needed to address the shortage of effective antibiotics. The CF Foundation's Infection Research Initiative supports much-needed research and development, but new policies are needed to promote a sustainable and robust antibiotics pipeline and marketplace that rewards innovation.
Each year, 2.8 million Americans acquire a serious infection caused by antibiotic-resistant bacteria. As a result, 35,000 Americans die. Globally, that number rises to 700,000, causing the World Health Organization to designate antibiotic resistance as a top global public-health threat.
Acute and chronic (i.e., difficult-to-treat) respiratory infections are a hallmark of cystic fibrosis. Even at very young ages, more than 60% of people with CF test positive for at least one bacteria that could make them ill. This rate increases to more than 80% in older ages, signaling the continued threat of multi-drug resistant infections to the CF community.
Antibiotics are unique in that their effectiveness can weaken over time. The need to use these treatments sparingly -- whenever medically appropriate -- means it's difficult for manufacturers of novel antibiotics to receive an adequate return on their investment. As a result, many manufacturers decide against the financial risk of developing new antibiotic drugs, leaving the antibiotics pipeline barren.
Antibiotic resistance is a public-health crisis that we can no longer ignore, and new solutions are needed now. The longer we go without policies that provide incentives for innovation and development, the weaker the pipeline of new antibiotics will become, threatening our chances of having effective antibiotic treatments in the future for people with CF and all Americans.
While this issue is not ours alone to solve, the CF Foundation along with the CF community is bringing urgently needed attention to the threat of antibiotic-resistant infections and encouraging lawmakers to invest in solutions for the vital antibiotics market.
People with CF face a heightened life-long risk of infections because of the thick, sticky mucus in their lungs. Routine use of antibiotics in CF care is medically necessary. However, too many people with cystic fibrosis find themselves battling difficult-to-treat infections for which existing antibiotics are not effective.
Because the effectiveness of antibiotics can weaken over time, a robust antibiotics development pipeline is a necessary part of ensuring continued access to antibiotics that work.
With few new antibiotics in the drug development pipeline, patients are left with significant unmet antibiotic treatment needs -- and we anticipate this problem will grow as antibiotic-resistant infections become more prevalent. The financial challenges associated with bringing a new antibiotic to market and keeping it there are great. Antibiotics rarely command a high price, and many antibiotic developers are struggling just to cover the costs of manufacturing their products.
In 2018, the CF Foundation dedicated $100 million through 2024 to an Infection Research Initiative as part of a sweeping effort to advance infection research. The Foundation already has committed more than $84 million to the initiative, and we will continue to fund any science that we believe holds real promise to address infections.
In addition to providing $41 million in academic research awards, we are currently funding 19 industry awards focused on infection. However, we also need to ensure new infection treatments that stem from this research make it into the hands of patients. To this end, we are working to strengthen the antibiotics market through a variety of actions:
Finding new ways to pay for antibiotics to rewarding companies that bring much-needed new antibiotics to market are vital. We need comprehensive action from Congress and the administration to enact policies that ensure access to antibiotics that work -- both now and in the future. Viable solutions include:
There have been two legislative proposals in Congress that aim to improve the financial outlook for new antibiotics: The Developing an Innovative Strategy for Antimicrobial Resistant Microorganisms Act of 2019, or DISARM Act, and the Pioneering Antimicrobial Subscriptions to End Upsurging Resistance (PASTEUR) Act.
The DISARM Act aims to spur investment and stabilize antibiotic prices by increasing payments for some novel antibiotics used in hospital settings. Our letters of support include:
The PASTEUR Act aims to improve the long-term financial outlook for new antibiotics by providing consistent payments to antibiotic developers for access to their products. Our letters of support include:
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