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 July 9, the Cystic Fibrosis Foundation's President and CEO, Dr. Michael P. Boyle, participated in the global launch of the AMR Action Fund. Alongside leaders in global health, Dr. Boyle highlighted the critical need of antibiotics for people living with CF and stressed that research investment alone will not solve the challenges of antibiotic development.
Published on July 9, 2020
On July 9, the Cystic Fibrosis Foundation's president and CEO, Dr. Michael P. Boyle, participated in the launch of the AMR Action Fund, a collective venture that expects to invest over $1 billion into the development of novel antibiotics to address the growing threat of antimicrobial resistance, or AMR. Speaking on a panel discussion, Dr. Boyle shared the challenges people with CF face with chronic infection and stressed the need for novel antibiotics as superbugs and antibiotic resistance continue to be a global health concern.
“This is a complex problem that puts all of us at risk, and people with CF are on the front line. While no single proposal will solve all the issues, today's announcement is an important step. Collectively, we must continue to create targeted economic incentives to invest in discovery and development of these desperately needed drugs,” Dr. Boyle said.
Dr. Boyle discussed the impact of necessary, routine antibiotic use and why new antibiotic development is more critical than ever during the panel entitled, “The AMR Ecosystem Challenges, Opportunities and Policies Necessary for Change.” He also highlighted the CF Foundation's Infection Research Initiative, a $100 million commitment through 2023 to advance infection research. Through this work, the CF Foundation is currently funding 12 new industry programs to develop treatments for CF-related infections.
Research alone will not solve the challenges of antibiotic development and ensure new infection treatments make it into the hands of people with CF, Dr. Boyle said. Policy solutions are also needed, he said. Currently, Congress is considering proposals to support the antibiotic pipeline, including the Developing an Innovative Strategy for Antimicrobial Resistance Microorganisms (DISARM) Act. This legislation would carve out antibiotics from Medicare inpatient reimbursement and provide a separate, additional payment for novel antibiotics. The Foundation supports this legislation, and if passed, the measure would provide immediate relief to antibiotic companies that are struggling to stay in business.
Moderated by Scott Gottlieb, former commissioner of the U.S. Food and Drug Administration, the panel featured panelists from The Pew Charitable Trusts' Antibiotic Resistance Project; Infectious Disease Society of America; CARB-X; and X-Biotix.
In March, the CF Foundation awarded up to $5 million for the first-ever controlled clinical study of phage therapy. Additionally, the Foundation announced in May an award of up to $5.6 million to develop a novel, inhaled antibiotic to treat drug-resistant bacterial infections in people with CF.
Interested in learning more? Watch the launch event here.
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