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.
Cystic fibrosis clinical teams from the U.S. and Chile implement changes to improve outcomes for Chilean patients. This is the second of a two-part feature in Network News.
Published on June 13, 2018
In Chile, life expectancy overall approaches 80 years of age, but life expectancy for people with cystic fibrosis is around 20 years.
Dr. Hector Gutierrez, director of the pediatric CF center at the Children's Hospital/University of Alabama at Birmingham (UAB), suspected that this disparity could be reduced by applying a multidisciplinary approach with a focus on quality improvement.
In 2014, Gutierrez, Cathy Mims, R.N., B.S.N., and their team began working with clinicians from San Borja Arriaran Hospital in Santiago, Chile (described in the first part of this article).
After identifying how the approach to CF care differed between San Borja and the U.S., the UAB team shared guideline-based CF care delivery practices and exchanged visits with the Chilean team. The Chileans were struck by the U.S.'s team-based approach
-- a contrast to Chile where traditionally, the doctor has been the sole decision-maker. Watching the UAB team helped the San Borja team and the pulmonologist, Dr. Maria Lina Boza, realize the benefits of working less hierarchically.
By sharing their outcome data over time with the San Borja team, the UAB team illustrated its commitment to quality improvement processes. For example, the UAB team members discussed how they improved body mass index (BMI) over time, which underscored
the value that each team member, such as the dietitian, provides by seeing patients during each clinic visit. By sharing data and processes, the San Borja team witnessed how the UAB team was able to improve outcomes.
The team at San Borja implemented changes, including:
The education and training that the San Borja team and their patients received began to pay off.
After nine months of interventions, the team found that people with CF who performed CPT at home were able to improve their forced expiratory volume (FEV1), and exposure to clinical pathogens decreased. In addition, they were able to increase
enzyme dosing, caloric intake, and prescribed nutritional supplements to all children. During that time period, the weight-for-height percentile for children younger than 2 improved, as did BMI percentiles.
The work continues. The team from San Borja began to share what they have learned from UAB with other centers in Chile, including Padre Hurtado Hospital and San Juan de Dios Hospital, both in Santiago. The UAB team planned a visit to Chile in April where
they worked with four local CF teams, for which the San Borja team served as a mentor -- a clear indication that the seeds of change are taking root.
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