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.
The 23rd annual Ultimate Golf Experience (UGE) brought together a star-studded lineup of entertainers and friends, who gathered in Newport Coast, Calif. to raise funds in the fight against cystic fibrosis.
Published on November 1, 2017
More than 225 supporters turned out for the 2017 annual Ultimate Golf Experience (UGE), which raised more than $700,000. Among the guests were celebrities who have remained loyal champions in the fight against CF for over two decades -- including UGE event host and Grammy Award-winning comedian Lewis Black, and acclaimed country music singer and songwriter Victoria Shaw.
Black, the CF Foundation's Celebrity Ambassador, first became involved 23 years ago at the request of comedian Rosie O'Donnell, whose nephew has CF. Inspired to do more, he became a staunch advocate for those living with the disease, encouraging friends from the entertainment industry to join him. Shaw, who became involved with the CF Foundation in 1998, has been performing at UGE for nearly 10 years and serves as talent coordinator, lining up big names in the country music business.
“We appreciate the generous support of all those attending UGE, who have turned out year after year to help bring us closer to our ultimate goal of a cure for everyone living with CF,” said Marc Ginsky, executive vice president and chief operating officer of the CF Foundation. “We have made so much progress in extending life, but the road to a cure is a long one, and we need the continued support of all those in our community to help reach the finish line.”
Shaw and Black were joined by other entertainers and celebrities, including Kathleen Madigan, Jeff Cesario, Jeff Stilson, Connie Chung, Maury Povich, Matt Rogers, and Matt Iseman. Shaw dazzled the crowd, singing “One Heart at a Time,” a song she wrote to benefit the CF Foundation, along with award-winning songwriters Georgia Middleman and Gary Burr.
Victoria Shaw performed at this year’s Ultimate Golf Experience.
A very special thank you goes out to the following corporations and individuals for their generosity in bringing this event to life:
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