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.
Ever wonder, “Does my donation matter?” Jodi Marquez-Klarenbeek is living proof of the collective power of raising funds. This Giving Tuesday, give to an organization that's changing lives today.
November 30, 2015
Jake Bachman’s Wish for the Future
Holiday Meals and Enzymes
For nearly two decades, Jodi Marquez-Klarenbeek's life consisted of pills, breathing treatments, doctor appointments and contracting various infections. As she got older, those infections became deeper and longer lasting, and the antibiotics used to fight off the infections became stronger. After her seventeenth birthday, her health decline began to speed up.
By age 22, she had silently given up many of the dreams that her friends were just beginning to plan. “The treatments felt like Band-Aids covering up a scar,” Jodi said. “Although each visit got me to feeling better, I never felt as good as before.”
Then, in 2013, Jodi experienced a life-changing event that would turn her world around. She was asked to participate in a clinical trial for a drug that would target the underlying genetic cause of the CF mutations she carried.
The results on her overall health were astonishing. Within two weeks of starting the clinical trial, Jodi gained 15 pounds -- a weight gain that was vital to her health. Along with the extra pounds, her appetite increased and her lung capacity felt like it was larger than life. She was finally able to walk -- and even run -- without her lungs tiring before her legs.
And equally important, her zest for life and hope for her future were restored. “I was able to embrace the most normal life I had lived in years. I got back my independence and finally felt like less of a burden. All the things that I never thought were possible were falling into place,” said Jodi.
Jodi can now focus on milestones that she never thought were a possibility, like marrying the man of her dreams.
“Today, I'm planning a future full of years as a wife and a mother -- titles which once didn't hold a place on my timeline.”
The drug that helped Jodi get back on her feet, Orkambi, was approved by the U.S. Food and Drug Administration in July 2015 for people with CF, ages 12 and up, who have two copies of the delta-F508 mutation. Orkambi was funded through the Cystic Fibrosis Foundation, the global leader in the search for a cure for CF.
Jodi would not have gotten to this point without the support of all those who have worked tirelessly to raise awareness and funds for cystic fibrosis research and care. “I know that this drug is not a cure, but it has given me the best two years of my life. To state it as simply as possible, I have been given a second chance at life.”
As Giving Tuesday approaches, consider donating to an organization that is adding years to the lives of people with CF like Jodi. Please consider giving $5, $50 or $500, so that you can make a difference.
Make a donation today.
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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