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.
Legislative negotiations are underway for the next relief package to provide additional protections for Americans during the COVID-19 pandemic. The Cystic Fibrosis Foundation implores Congress to expand paid family and medical leave during the COVID-19 pandemic for those at possible high risk and working members of their households.
As the COVID-19 pandemic continues to spread, millions of Americans, including those living with cystic fibrosis, are facing a devastating decision: place their health or their loved one's health at risk by going to work, or possibly lose their income
altogether. Current family and medical leave policies do not go far enough to protect all Americans, especially those with underlying conditions. Eligibility for the paid family and medical leave program must be expanded to include individuals at
possible high risk for adverse complications from COVID-19 and working members of their households.
Because of the scientific progress seen in the CF community, more adults with CF are employed now than ever before. In fact, since 2003, the median age of a person diagnosed with cystic fibrosis has increased exponentially. By 2018, almost 40 percent
of adults living with CF were employed full time and more than 12 percent were employed part time.
"[Trikafta® has given me] a life I never thought I'd have,” said Katie Fielding, an adult with CF. “Being in the best health in my life and having to be concerned about how my disability affects my employment isn't something I should have to
be concerned with during a global pandemic."
The CF Foundation is leading the charge to expand paid family and medical leave to protect people
living with CF and other Americans who are most vulnerable to the adverse effects of COVID-19. To date, our advocacy includes:
Additionally, the Foundation has heard unique stories about the choices families have made during the pandemic and why expanding paid leave may have changed their situation.
“I don’t see myself having the ability to go back to work,” said Laurin Scarpelli, a mom of two children with CF in a recent Huffington Post article. “People say money can’t buy happiness, but it does buy safety, and we’re going to lose that.”
We are asking the CF community to continue using their voices to remind Congress that any negotiated COVID-19 relief package MUST include expanded paid family and medical leave.
It is not an option; it is a necessity.
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Cystic Fibrosis Foundation
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