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.
I can say without hesitation that the cystic fibrosis online community is unlike any I've ever seen. In my new role, I am excited to see the very engaged CF community in action. I can't wait to communicate with everyone, especially those in the online community, and see where you'll take us next.
October 28, 2015
I Hope I Inspire You, Too: A Letter to my Best Friend
To Travel is to Live
To make changes -- large and small -- in the world, we need to feel supported and we need to feel that we have a voice. That's where communities come in -- and why online communities are so revolutionary. I've spent a big portion of my career fostering online communities, composed of people across industries and around the globe, with powerful visions for how the world can be.
I jumped straight into the deep end of the cystic fibrosis community -- the third week of my new job with the Foundation -- when I covered the North American Cystic Fibrosis Conference on social media. From just a few days in Phoenix, and a handful of weeks on the job, I can say without hesitation that the CF online community is unlike any I've ever seen.
Having worked in journalism, public relations and digital communications for practically my entire career, I'm careful with my words. As a strategic communicator, my goal is to make sure messages are as clear as possible and that they communicate the right information and sentiment. But, the Southern Californian valley girl in me embraces hyperbole: “totally,” “awesome,” “radical,” “very.”
That adverb “very” has lodged itself in my mind ever since I started getting to know the CF online community. Most writers and editors will tell you that “very” is superfluous and should never be used. Choose a more descriptive word for what you're naming: she's not “very intelligent,” she's “a genius;” the challenge isn't “very large,” it's “gargantuan.”
But, so far the CF community -- especially the people and groups I'm encountering online -- are owning “very” in a way that I've never anticipated in all my years of communicating: You are all very informed, very passionate, very active and very very committed.
NACFC gave me a chance to see the very engaged CF online community in action: from clinicians and researchers tweeting about their sessions; to the moms of kids with CF organizing themselves and communicating with each other; and to the adults with CF at home live-streaming plenaries, engaging with our content to add their own experiences and ideas to the conversation.
Plus, this was a very big year for the Foundation on social media at NACFC. We increased our tweets by more than 230 percent compared to last year's conference, reached more than 320,000 people on Facebook and posted one of our most-liked photos ever on Instagram.
For me, NACFC was just the beginning. In my new role, I am excited to use digital communications and technology to help build the CF online community in ways we never imagined. The fact that we must organize ourselves as an online community -- first and foremost because of potentially harmful germs spreading among people with CF -- gives us a real opportunity to refocus the Foundation's communications as it becomes a truly patient-centered organization.
Thanks to the Internet, there is practically no limit to the potential ways we can connect, learn and share -- from our CF Community Blog, to hashtag campaigns on Twitter and Instagram, to video hangouts, to conversations on our Facebook page.
I want to help the CF community, and the Foundation, become the leaders in patient-centered digital communications. Together, we will better assist people with CF and their communities to address physical and emotional health needs; get information about CF therapies, treatments and clinical trials; and connect with caregivers, researchers and each other. I can't wait to communicate with everyone, especially those in the online community, and see where you'll take us next.
I am very excited to be connecting with you all.
Online Community Events Lead, Cystic Fibrosis Foundation
Emily is the online community events lead at the CF Foundation. She comes to the Foundation after serving for three years as digital director at the Peace Corps. Emily has worked as a digital strategist for nonprofits, agencies and political campaigns, including three years with Organizing for America. In 2006, Emily earned a master's degree in cross-cultural journalism from the Missouri School of Journalism. She loves traveling, reading, exercising, cooking and eating well.
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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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