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.
As I join the Foundation as chief operating officer, I look forward to taking the time to hear as many community voices as I can, to learn from all you have done and to engage to help do my part.
May 2, 2016
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I join the Cystic Fibrosis Foundation as chief operating officer after 18 years working at a corporation whose mission was to “bring the miracles of modern medicine to market sooner” and helping lead a division whose purpose was to facilitate access to those miracles. I am excited by the opportunity to hear the stories of the CF community, to learn more about your needs and to engage with all of my colleagues and all of you to help deliver on the mission of the Foundation.
During the interview process, every discussion, interview and meeting with members of the team increased my interest in becoming part of the Foundation. What really stuck and convinced me that this was a unique opportunity was something Foundation president and CEO Preston Campbell said over an interview dinner that included my wife, Elissa. She asked Preston why he believed the Foundation was making such incredible progress while so many other organizations struggle. His answer was simple and elegant: “It is because of the community.” His use of that term included employees, physicians, researchers, donors, volunteers, caregivers and, of course, people with CF.
The Foundation's work is proof that the power of a community to accomplish amazing things is without limits. A quotation from Edwin Land, the inventor of Polaroid film, has been pinned on my bulletin board for the last five years or so: “Do not undertake the program unless the goal is manifestly important and its achievement nearly impossible.” Curing a disease as terrible as cystic fibrosis and improving the quality of life of those with the disease is manifestly important.
As recently as 20 years ago, a cure for cystic fibrosis seemed nearly impossible. This community has made the impossible seem possible.
I have spent nearly two decades working in health care and long ago decided that I always would. I feel privileged to join this community of passionate people pursuing such a noble mission. I hope that I can contribute in some small way to helping the Foundation continue and accelerate the progress that has been made. There is important work to be done, and I look forward to taking the time to hear as many community voices as I can, to learn from all you have done and to engage to help do my part.
Thanks to all of you for welcoming me to your community.
Executive Vice President and Chief Operating Officer, Cystic Fibrosis Foundation
Marc Ginsky is the executive vice president and chief operating officer of the Cystic Fibrosis Foundation. Prior to joining the Foundation, he spent most of his career at Covance, one of the world’s largest and most comprehensive drug development services companies. Marc holds a J.D. from the University of Pennsylvania Law School, an MBA from New York University’s Stern School of Business and a B.S. in accounting from the State University of New York at Buffalo. Originally from Syracuse, N.Y., Marc now lives in Bethesda with his wife and two daughters.
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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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