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.
Last updated on December 21, 2012
Just a few days after Hurricane Sandy came to town, the Delaware Valley Chapter rallied to make sure its Breath of Life Gala went off without a hitch.
Emily Kramer-Golinkoff, age 27, who has CF, brought the crowd to its feet with her compelling Bid for a Cure speech, which raised an amazing $160,000.Photo courtesy of Katie Reynolds.
More than 500 people gathered at the Philadelphia Downtown Marriott on November 3rd for the annual fundraiser, which was held in honor of Drexel University President John A. Fry. The evening raised more than $450,000 towards the fight against CF, making it the chapter's most successful gala to-date.
“The Cystic Fibrosis Foundation sets the standard for what effective venture philanthropy can and should be,” Fry said in his remarks. He then went on to recognize the generous volunteers and donors who support the CF cause, and the medical professionals - including his colleagues at Drexel - who devote their careers to treating people with the disease.
The event featured a silent auction that sold an array of vacation getaways, signed sports memorabilia, fine jewelry and designer handbags. All-in-all, the auction raised nearly $30,000 for the search for a cure for CF.
Breath of Life co-chair Joe Jacovini and his wife Ann enjoy the evening with the 2012 Philadelphia Breath of Life honoree, Drexel University President John A. Fry, and his wife Cara.Photo courtesy of Katie Reynolds.
Emily Kramer-Golinkoff, age 27, who has CF, dazzled and moved the audience with her Bid for a Cure speech. As a distinguished graduate from the University of Pennsylvania, a full-time employee at Penn Medicine and a graduate student pursuing her Master's degree, Emily has never let CF get in the way of pursuing her dreams.
Emily captivated the audience as she delivered a powerful, touching testament of what it's like to live with CF and fight the disease every day. The speech evoked a standing ovation and raised an amazing $160,000.
“The extraordinary efforts of our co-chairs, committee, President Fry and his team from Drexel resulted in one of the most high-energy chapter events ever, to say nothing of its outstanding financial success,” said Eileen Miley, executive director of the Foundation's Delaware Valley Chapter. “We are indebted to our friends and supporters whose commitment and dedication are bringing us closer than ever to our ultimate goal of finding a cure for CF.
The Delaware Valley Chapter would like to thank the event co-chairs:
Its generous sponsors:
And other key volunteers who helped make the event a success:
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