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.
Creative use of technology can help build a more connected community. Read on to learn about the Cystic Fibrosis Foundation's innovative efforts to include more people with cystic fibrosis.
October 21, 2015
Real Talk: Expectations vs. Reality – Part 2
The challenges that people with cystic fibrosis face are wide ranging, and we've heard from countless adults that one of the most difficult aspects of the disease is the feeling of isolation stemming from the
risk of spreading certain germs among each other. We understand how important it is for the stories and experiences of people with CF to be shared, so we are trying to find innovative ways to utilize the latest technologies to include more people with CF in all that we do. While technology certainly does not solve everything, it does begin to bridge the gap.
For the past two years, our CF Adult Advisory Council has convened via video conferencing. Working with council members and others in the community, we've piloted creative and complex tools to build a more in-touch community. This includes our most recent collaborative tool -- a robot. Sounds nuts, I know, but let's face it, we didn't know we needed iPhones until we had one, right?
KC White, chair of the council, said it best during our virtual holiday party last year, “We found a way to communicate with each other and, in the process, created a meaningful virtual community.”
Video-conferencing is now being used throughout the Foundation to bring more people with CF -- and others -- together from across the globe to provide valuable insights, join meetings and build our community.
The Foundation has been streaming more and more sessions from various events to allow people with CF, and others, to watch and be able to participate in Q&A sessions. At this year's
North American Cystic Fibrosis Conference, over 20 sessions were live-streamed (register here to watch the free recordings). But we recognize that's not enough; it's equally important to ensure that people with CF are still involved in the presentations and discussions. So, the Foundation has found new ways to invite people with CF to join a conference virtually to lead and participate in these conversations.
Like video conferencing, live-streaming is now a vital advancement in our collaboration toolkit.
The newest program that we are piloting is bringing people with CF into various events via a mobile device -- a robot. The robot is essentially a tablet on wheels that allows the user to participate in events with mobile capabilities, such as driving to meetings and adjusting the height to “sit” or “stand” for conversations. Andy Lipman, a 42-year-old Georgia native with CF, piloted the technology for us at NACFC two weeks ago.
Andy commented, “This technology was definitely fun to use and I can see the value if we can work out some of the connectivity and noise kinks.” The robot certainly caught the attention of many attendees and allowed for a meaningful discussion. We will continue to identify more opportunities to use this new engagement tool.
These are just a few of the ways that we are using technology to build a more in-touch community, and we want to know what you think of these efforts. Do you know of any other tools that the Foundation should consider piloting?
Senior Manager of Community Partnerships, Cystic Fibrosis Foundation
Danielle listens to and partners with people with CF and their families to create meaningful opportunities for connection. She also leads the creation of online spaces and events for people in the CF community to connect, learn, share and inspire each other. Danielle earned her B.A. in communications from American University in Washington, D.C. She currently lives in Littleton, Colo., with her husband Vince and dog Baci.
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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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