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.
People with cystic fibrosis continue to live longer and healthier lives, and the Patient Registry data support this general trend. To understand what this means for our community, however, it is important to understand how these numbers are calculated and what they represent.
The Cystic Fibrosis Foundation Patient Registry was created in 1966 to track the health of people with cystic fibrosis who receive care at CF Foundation-accredited care centers and agree to share
their data to inform continued quality improvement in treatment and specialized care.
Each year, the CF Foundation analyzes these data and shares this information with the CF community through the Patient Registry Annual Data Report.
Based on 2017 Registry data, the life expectancy of people with CF who are born between 2013 and 2017 is predicted to be 44 years. Data also show that of the babies who are born in 2017, half are predicted to live to be 46 years or older.
To understand what this means for our community, it is important to understand how these numbers are calculated and what they represent.
Median predicted age of survival refers to a median (the mid-point of a number set), while life expectancy refers to an average -- but the terms are often used interchangeably. It is a calculation that looks at the CF patient population, as captured in
the Registry, at each age in a single year. This methodology is an internationally accepted calculation for determining life expectancy.
The latest CF Foundation Patient Registry data show steady gains in survival for people with CF. Because CF is a rare disease, however, small changes in the population can have a noticeable impact on survival calculations. Statisticians and clinicians
caution against putting too much emphasis on data collected in a single year, which is why it is important to keep in mind that life expectancy at birth is a calculation that can fluctuate from year to year and may decrease in the future.
Data also show that of the deaths reported in the Registry in 2016, known as the median age of death, half occurred before the age of 31 -- meaning too many people with CF miss the opportunity to finish school, begin careers, start families, and reach other milestones.
For those living with the disease, many still face significant challenges, including frequent hospitalizations, complications such
as CF-related diabetes and depression,
and time-consuming treatment plans that can take 2-3 hours a day.
So, we still have a long way to go -- particularly for those who have mutations that result in faster and more severe disease progression, who do not yet have disease-modifying
treatments approved to address their mutation, or who cannot benefit from modulator therapy due to advanced disease.
Although life expectancy and median age of death can be helpful to track the progress made for the general population with CF followed by the Registry, these numbers do not predict how long you, as an individual, will live.
As statistical calculations for the general population of people with CF, neither of these figures take into consideration your personal characteristics, such as your mutation, how severe your disease is, or how you respond to different CF treatments
as part of your daily CF care.
“Statistics are impersonal. They are about 'people with CF,' but not necessarily me.” -- Linda Bowman, adult with CF
These calculations also don't reflect the potential benefits of cystic fibrosis transmembrane conductance regulator (CFTR) modulator therapies or
the continuous improvements in specialized CF care.
For this reason, you should talk to your CF care team if you have questions specific to your personal health.
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