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 pursuit of better outcomes for cystic fibrosis patients in Chile, a multidisciplinary team from the U.S. visited a clinical team in Santiago to help integrate elements of the U.S. CF care model practice into their processes. This is the first of a two-part article feature in Network News.
Published on March 26, 2018
Chile is a prosperous Latin American country with an average life expectancy approaching 80 years. Public health care is available for all Chileans and for those with cystic fibrosis, specialized care must be provided by law. This includes access to specialists,
such as pulmonologists, and CF-specific medications, such as tobramycin and dornase alfa. Yet, average life expectancy for Chileans with CF is only 20 years.
In the United States, decades of research indicated that a disease as complex as CF required coordinated care delivered by multidisciplinary teams, as well as constant evaluation and refining of processes -- in other words, quality improvement. Care delivered
by multidisciplinary teams that focus on quality improvement, in part, led to steady gains in life expectancy and quality of life for Americans with CF. Dr. Hector Gutierrez, director of the Children's Hospital/University of Alabama at Birmingham
(UAB) pediatric CF center, found these crucial elements missing from CF care in Chile. He then joined Dr. Maria Lina Boza and her team at the San Borja Arriaran Hospital in Santiago, to integrate these elements of the U.S. CF care model into their
processes in pursuit of better outcomes for CF patients in Chile.
As a first step, the San Borja team -- pediatric pulmonologists Drs. Boza and Hortensia Barrientos, a dietitian, and a nurse -- visited the UAB care center in 2014 to see how care was provided to improve outcomes. That trip was followed by two UAB team
visits to Santiago. As part of the UAB team on this trip, Cathy Mims, RN, BSN, observed how the San Borja team worked and reviewed outcome measures, such as forced expiratory volume (FEV1) percentages and weight gain.
The UAB team found key differences between the U.S. and Chilean approach:
The two visits between the Americans and the Chileans helped each team get to know the other, their processes and outcomes, and some of the challenges the Chileans faced. Most important, they helped lay a foundation of trust that was necessary for implementing
change. From this foundation, formal quality improvement began.
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