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.
Mallory Smith, who was diagnosed with CF at age 3, has always loved the outdoors - especially the ocean.
Published on August 15, 2013
Born and raised in California, Mallory’s annual family vacations to Hawaii allowed her to develop a passion for the environment at an early age. She learned how to swim when she was just a toddler. When she was 5, her father taught her how to dive under the waves and listen to whales singing in the distance.
“When my family would go to Hawaii, I would spend the entire day in the ocean, just listening to whales. The oceanic climate was so therapeutic for me, it was as if I didn’t have cystic fibrosis,” Mallory said. “Research eventually came out that hypertonic saline — a salt-water solution — helps the lungs and everything started to make sense.”
For Mallory, those defining moments helped make her who she is today — a junior at Stanford University, majoring in human biology with a concentration in environmental anthropology.
Following her Dreams
Mallory, now 20, spent much of her childhood and teen years in and out of the hospital, missing as many as 40 days of school in a single semester due to complications from cystic fibrosis. Despite the hospitalizations, time-consuming treatments and hours of make-up work, Mallory graduated from high school with a 4.3 GPA.
When she first thought about attending college, she wasn’t sure Stanford was the right school for her. She applied on a whim, knowing the university had an excellent cystic fibrosis clinic on its campus.
“Whenever I had severe complications growing up, I would go to Stanford University Medical Center,” Mallory said. “Because my health is so unpredictable, it’s important that I have access to high-quality care, and I knew Stanford could provide that.”
Between classes, homework, social activities, exercising and making time for three rounds of breathing treatments each day, her schedule can be daunting, but Mallory is determined to reach her goals.
“I’ve always loved the ocean, so when I found majors related to Earth sciences, I knew that was what I wanted to go into,” Mallory said. “Stanford’s small class sizes and its cystic fibrosis center are helping me pursue my dreams.”
Upon graduating, she hopes to use her degree to help protect the environment she cares so deeply about.
Mallory credits her success to a strong support system. She’s from a tight-knit community in Beverly Hills, Calif. where everyone knows her name and that she has CF. Each year, friends and neighbors come together for a fundraiser Mallory’s family started in 1995 — An Evening in Mallory’s Garden.
The event, which features live and silent auctions, has generated more than $2.5 million to help support the mission of the CF Foundation.
“We want the fundraiser to feel like a fun Saturday night with friends because that’s really what it is. I know every single person there,” Mallory said. “The Foundation has done so much for me and the CF community, and this is our way of giving back.”
Until a cure is found, Mallory hopes her life will inspire others with CF to pursue dreams of their own.
“The advancements I’ve seen in my lifetime have been incredible; people with this disease can do anything they put their minds to,” Mallory said. “The key is to be consistent with treatments, exercising, eating right and sleeping. I would encourage anyone with CF to dream big.”
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