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.
Learn why Anna Kampas, a young adult with CF, faces her challenging treatment regimen head on.
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Anna Kampas looks like a typical 16-year-old. She loves sports and excels at soccer, skiing and track. Unlike most teenagers, though, Anna begins her day at 5:15 a.m. Before she can even begin thinking about school, sports or boys, she must complete 30 minutes of cystic fibrosis therapies and take dozens of pills just to stay healthy.
For Anna, there is no compromising. Sticking to her health care routine is a must. "My treatments and therapies are my number-one priority," said Anna, who was diagnosed with CF when she was an infant. "I want to live a long, healthy life and I know doing my treatments will help me."
For many with CF, the burden of treatments can be a real challenge, but Anna faces that challenge head on. She began taking full responsibility for her own treatments and therapies when she was in middle school.
This is no small feat. Anna's health regimen consists of a mechanical vest that loosens mucus from her lungs, nebulizers, inhalers, and dozens of medications. On a regular day, Anna spends more than an hour completing treatments, in the morning and again in the evening. When she is sick, she completes treatments every four hours-even through the night. Still, she rarely misses a step in her routine.
"She's always been that way-she's incredibly independent," said Anna's mother, Stephanie. "She was changing her own feeding tube at 6 years old, not because we asked her to, but because she wanted to learn how."
Anna credits her parents and her care team at Children's Hospital of Pittsburgh of UPMC for empowering her to take charge of her own health at an early age. She says they taught her just how important it is to lead a healthy lifestyle.
“I only have one life and I'm going to live it to the fullest,” Anna said. “If my choice is to be sick all the time or spend a few hours each day doing treatments, I'm going to choose the treatments.”
Anna's care team has also inspired her to dream big. After graduating from high school, she has her sights set on going into health care, and hopes to become a physician's assistant.
“My care team is like family. I'm always so inspired by them,” Anna said. “I really want to go into medicine and help others, the way my doctors and nurses have helped me.”
Former Writer/Editor, Cystic Fibrosis Foundation
Dora previously worked at the Foundation as a writer and editor. During her tenure, she loved to listen to others share their memories and experiences, and consumed storytelling in all of its different forms. She constantly looks for the uniqueness in everyone's story. Dora has a B.A. in communications from the University of Maryland, College Park, and an M.S. in public policy and administration from the London School of Economics. Born in Budapest, Hungary, Dora was raised mainly in the Washington, D.C., metropolitan area where she currently resides today.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It 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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