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.
In the third plenary, Dr. Peter Mogayzel reminds us of the challenges faced in CF care, the progress we've made, and the work still ahead to meet the needs of all with cystic fibrosis and their families.
November 5, 2019
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We Are at a Transformative Time in the History of CF
“This isn't a story of a medical miracle” appeared on the screen, kicking off the third plenary at this year's North American Cystic Fibrosis Conference. This is our story. And, as an adult CF nurse coordinator, it is a story that I am proud to help write.
At the plenary, Dr. Peter Mogayzel led us through our past challenges and how we've met them to bring about the decades of progress we now see. This has always been with the people with CF and their families alongside of us.
Our story started with CF as a fatal, childhood disease, affecting multiple organ systems. There were no treatments, and no care centers. We met this challenge with the help of Dr. LeRoy Matthews and colleagues who developed an approach to not only treat infections, but to include prevention.
Amanda Leonard, a dietician, had the idea to recruit seasoned clinicians to train new ones in their specialties. This single idea has led to 350 mentors training more than 800 clinicians in multidisciplinary teams. These teams form a network of accredited care centers that now serve people with CF all across the country.
With early treatments and care practices, we needed to know if this care actually worked. A team, led by Dr. Carl Doershuk, figured out that by measuring what we do, we can improve. We learned that when CF is diagnosed and treated early, we could slow the disease progression. Thus began the need to test for CF in newborns. Thanks to Dr. Phil Farrell and others, the majority of people with CF in the U.S. and some around the world, are now diagnosed, starting with a newborn screening.
Against these challenges, we've made incredible progress. Most recently adding Trikafta™, the latest weapon in our arsenal against this disease. And, with the promise of a brighter future for many, comes new questions as many more grow older with CF, facing challenges we've yet to imagine. As one 60-year-old noted in a video during the presentation, we don't know what CF medications might do to a “geriatric body.”
We discussed these challenges as a panel, where I was joined by Dr. Cindy Brown and Dr. Terri Laguna. The ones that struck me the most were:
As a community, we have a long history of bringing about the medical evidence and practices that make up specialized CF care. It is this track record that gives us the confidence, knowing that together, we can write the next chapter in CF care as one of even greater innovation and impact to meet the challenges ahead.
If you weren't able to see the plenary session live, you can watch it below.
Adult CF Nurse Coordinator
A nurse coordinator for nine years, Sue serves as the nurse coordinator and program coordinator at the adult cystic fibrosis center at Oregon Health & Science University (OHSU). She has served on the Cystic Fibrosis Foundation’s Education Committee and also been a program coordinator mentor. Sue participates in the CF Learning Network with the OHSU team and has participated in the Learning and Leadership Collaborative Transplant Transition Project with the Johns Hopkins adult CF team. Sue has been a moderator and speaker at the North American Cystic Fibrosis Conference for several years. It remains her goal to embrace and enhance the partnerships she has with every person with CF she has the honor to care for.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site 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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